Sunday, June 27, 2010

Geodon Failure

Well, the last two days have been NOT FUN.

Having a symptom show up less than twenty-four hours after bumping the Geodon dose up to three pills, was rather suspicious.

When undressing for the evening, I noticed a speckling of tiny bruises on my upper left thigh, in a V and then a dot farther up, almost as if something had traveled a path in my veins, or bled along a path, which freaked me out. I began wondering about strokes and other things, which is rather EXTREME, even for me with my anxiety disorders and panic disorder.

I literally thought I was going to DIE, so I took a Lorazepam, as directed, for agitation. I left a message with her office the next day, because I HAD had my last appointment with her on a Saturday, I figured she might pick it up (I marked it urgent) before she left for the day. Apparently she didn't.

Anxieties in full swing, I applied some cognitive behavioral techniques to calm myself down, a bit, as well as having talked on the phone with my mother-in-law.

Later in the day, I continued with the second day of the new dose of three pills, hoping nothing untoward would happen, but knowing that if it did, I'd be calling the prescribing psychiatrist's cell phone Sunday morning at a decent hour, because TWO symptoms in a row would be too much to ignore.

Well, something happened, within 4 hours of taking the second dose. With apologies for the graphicness, I had a bit of blood before a runny stool. I grew VERY alarmed, and was in panic mode, "I'm gonna die of a stroke, because if it's bleeding in various parts of my body, it could decide to bleed ANYWHERE!", being the type of thoughts I was having.

I took a Lorazepam again this night, as well as I requested for my husband to give me a priesthood blessing. What was said in the blessing calmed me down completely on the score of worrying about further symptoms from the Geodon; there would be no further ill effects, so I had faith that what was said in the blessing was true, because that's what I was raised to believe. To trust in the Lord, and the priesthood that the men in the church have to use in His name. Part of trusting in blessings like these is to also make use of modern medicine, and to not just leave everything up to faith; you are to still see your doctors, and make use of them as you normally would, so I did not cancel my intentions to call her in the morning about the symptoms. It is what a prudent person would do, after having had symptoms of unusual bleeding or bruising after recently upping the dose of a new medication as directed.

I called her this morning, and I'm to lower the dose back down to two 40mg pills, and to keep her informed about how things go.

Let me tell you, spending two days wondering if you might die, has not been fun, even though you KNOW it's the panic disorder, possibly aggravated by agitation-caused side effects of the Geodon, because you normally don't go to such extreme conclusions based on a little side effect or two like that. You would worry alot, but not think you would DIE right off the bat. I am SO grateful for blessings, too.

Now all I've got to worry about is the pain of taking off the tapings they did to my knees at physical therapy . . . oh, and what mood stabilizer are we going to try next?

As well as, getting to sleep is going to be harder, because when I was on two Geodons previously I was on the last of the Seroquel stepping down, and now I'm not, so I won't have as much sleepiness effect from the Geodons without that. Although they do make me a bit sleepy.

The low-dose aspirin I take, half a day away from the Geodon, that the pharmacist had said wouldn't be a problem with the Geodon if I only took ONE, since the Geodon bottle said to not take with aspirin, that I take for up to 6 months post surgery for blood thinning reasons, well, I think there was perhaps some interaction between the two of these to create the symptoms mentioned above. I can't remember if the psychiatrist knows about the aspirin or not, I think she does . . . . I'm going to not take today's, just to be safe, and then resume the aspirin tomorrow.

Tuesday, June 22, 2010

Welcome to the Pharmaceutical Hassle of Utah's Medicaid

Well, I had my Medicaid orientation last week.

The GREAT news after getting on the horn today with the State Medicaid office is that the retroactive Medicaid cards I was supposed to have gotten, weren't screwed up and I wasn't accidentally applied for not retroactive. They must have gotten lost in the mail. Even better than the 90 days retroactive before my April 13th surgery on my right knee, is that it goes retroactive all the way to January first, which covers the home physical therapy and home rental of the knee machine rental from the FIRST, left knee, surgery, too! I hadn't thought that most of January would be covered! And, after the orientation last week, I had thought that, since I had only received a card for June, it sounded like I might only get the cards for the 90 days prior to JUNE, and not prior to my SURGERY date, and had resigned myself to only getting the last month of my previous surgery's physical therapy paid for, as well as the anesthesia from this surgery, which is the first bill that came through for it and maximized out our deductible . . .

I am also unsure of how to submit pharmacy expenses from earlier in the year, if I even can at all, which I probably can't. That was one thing I forgot to ask the benefits lady at the orientation, but I've got her number, so I can call and ask.

They're sending me new retroactive cards going back to the beginning of the year, but said I can use the number off of June to give to providers. It's a good thing that retroactive expenses do NOT need to be on the provider list with the plan I picked for June and going forward, because the plans they had did NOT have my orthopedic practice (knee, hip doctors), nor my physical therapy place, etc. For retroactive stuff they just pay it straight from the state, without going through a plan.

Anyway, now to the pharmaceutical stuff, which I was looking at today. There was NO NO NO mention in the orientation about something that happened a year ago, in our state legislature, but THAT's no surprise since they are working with printed books that are from 2008!!!! UGH UGH UGH UGH!!!! I mean, REALLY!!!

What happened in 2009, was this:

Preferred Drug List

During the 2007 legislative session, the Utah State Legislature passed Senate Bill 42 allowing Medicaid to adopt a preferred drug list (PDL). During the 2009 legislative session, the State Legislature approved SB 87, which authorizes Utah Medicaid to require a Prior Authorization for non-preferred drugs. The PA requirement became effective May 18, 2009.

Direct from the horse's mouth, as it were. After looking through the two lists, there's only ONE of my medications on the "Preferred" list, and that's generic omeprazole. My other meds are Vyvanse, Geodon (still ramping this up), Lorazepam, topirimate (generic Topamax), and, not prescribed yet by the new psychiatrist but part of an as needed basis prescribed by previous psychiatrists and listed to the new one, and not told to stop, taken as needed when I remember which I usually don't, alprazolam, the generic for Xanax. The Lorazepam is also as needed, which I've only needed it once for agitation in the two and a half weeks I've been on Geodon now, and I suspect that that situation would have aggravated me Geodon or no.

Anyway, so I'm not concerned/worried about the Xanax, since I forget about it most of the time. That leaves four medications for my psychiatrist to get approved by Medicaid. Now, she doesn't TAKE Medicaid so she probably won't be used to this; Medicaid is contracted with Davis Behavioral/Mental Health, in Davis County, where I live.

I wrote once or more about how I had, once upon a time, seen them in the mid-90's for counseling; in fact, the time I tried to kill myself, was the week my counselor went on vacation, although there were MANY other factors at the time as well; THAT, though, was one of them - Having my ear to talk to taken away from me, when I was in the middle of so much . . . but that was a difficult time, when I understood so much LESS . . . I wrote, once or more, about how I had used their services, and then, several years later, tried to turn to Davis Mental Health again, and was told something like, unless you are funded from a certain source (I assumed, Medicaid or Medicare), we can't see you . . . funding cuts . . . They had previously seen me on a sliding scale, but couldn't see me at full price even, at this subsequent time. I then left, disbelieving, that society didn't even care if its citizens had any kind of mental health services . . . .

I eventually related that story, with assurances that I was now currently in treatment with a psychologist and psychiatrist, to my state's then-governor, Jon Huntsman, over the radio, KSL 1160, on a radio call-in show with Doug Wright as the host. I brought the issue of mental health issues and funding up, since it was the fact that the state hadn't picked up the slack in funding brought about by the federal dropping 7 mil in funding; the state had only picked up $2 million of it, and needed to pick up MORE of it, because people like ME had fallen through the cracks, like the story I just illustrated. The responded kindly and nicely and seemed to understand my point. Let me tell you, I was scared to DEATH, lol!

Anyway, back to the stupid Medicaid drug approval process. This is ASININE that it wasn't a part of last week's orientation!!! And then, to have 4 out of 5 medications not on the list? Heck, there wasn't even a category for anti-psychotics, or for mood stabilizers, or for antidepressants, or for ANY kind of mental health medication!!! Probably because of the cost, and probably why they want them approved . . . . stupid bunch of red TAPE!!!

Even though my insurance doesn't run out until the end of July, I'm going to ask her at the early July appt. to work on it; I'll have to print out copies of the form at the library, as our printer recently died. I hope she doesn't say, YOU do it. SHE has to, if you click through at that page and read the form . . . she's supposed to include a copy in my chart, for audit purposes, too. Not that she takes Medicaid, but since I'll be getting the medications using the Medicaid benefit after July, she'd better fill out the forms, I mean, what choice does she have?

I am not sure how I'll pay her after the insurance goes . . . like I say, Medicaid is contracted through Davis, but I'm a little leery, because what if we suddenly don't qualify, like if my husband gets really lucky with the job search on the pay rate? Yeah, one can wish, but maybe the Lord will bless us. What if that happens, and then I'd have to drop THAT psychiatrist, too? So that's why I'm leery, for one reason, to switch, even though I haven't been THAT happy with this new psychiatrist. Plus, we're currently trying a new medication, and I hate to switch in the middle of a trial.

I REALLY hate red tape, though. I do feel for the extra time an already burdened w/paperwork doctor must feel, BUT . . . I don't have a choice, here. Medicaid ain't much fun for the patient, either, people. I feel like a show dog being led around by the nose - go here, do that, get this treat that tastes like crap, go do that, jump through this hoop . . . . yada yada, etc.

Thursday, June 10, 2010

PsychoPharmacology: Make It Up As You Go, & Damn the Patient!

You want agitation? You got it!

I want to prove this lady WRONG.

WHY do I keep getting psychiatrists who won't LISTEN?

Even worse, being dismissive of my concerns, is rude, hurtful, potentially medically harmful, and insulting, besides being destructive towards the therapeutic relationship, if it can be said that my psychiatrist and I have much of one.

You don't have to DO what I say, but HEAR me, please! Give me the respect of listening; I thought that was part of your job. When it becomes SO obvious that you AREN'T LISTENING, I just want to tear my hair out!

Okay, so I go in today, and say that I feel less stable since she's had me lower my topirimate (generic for Topamax) dose from 150 to 100mg. She wasn't the original prescriber of this; my last psychiatrist was. I talk about why I feel less stable, and this she listens to.

I tel her I don't seem to be feeling any effect from the Seroquel, which had been upped from 300 to 400mg last time, other than the usual bedtime sleepiness; it is decided that the Seroquel isn't working.

She decides to prescribe Geodon, which is especially good for the manic side of bipolar, I'm not sure if it handles both sides . . . . she lists some of the effects, and side effects, noting that "it helps stop cravings for carbs.". She happens to sub-specialize in nutrional issues, not that I've ever mentioned a carb problem, but I respond with the fact that I have PCOS (Poly-cystic Ovarian Syndrome), which tends to cause its sufferers to crave carbs, and she seems delighted that this little aspect of the medication will be so suited to counter something I have.

Like carbs are a major issue, here. DEFINITELY not a priority, although since we're poor, pasta and rice are often on the menu.

Besides, this medication has the potential to raise my blood sugar, with the potential in some cases for diabetes, I think, as well as it has the potential to cause weight gain (the literature I got listed this weight gain for 7% of the schizophrenic patients and didn't mention anything about it for the bipolar patients, but I doubt the weight gain would discriminate between the two). Now, I may have recently lost some weight, but I weigh enough (around 240, right now) that putting me on a medication with these two potential side effects (which, as a difficulty for the psychiatrist, so many of the bipolar medications seem to have these, which is why I think I've been prescribed such non-traditional mood stabilizers, as a way to avoid those, esp when I was in the 280's and 290's) is a questionable thing to do, in my mind.

Still, I'm not the doctor, and as I mention above, the choices are limited for mood stabilizers that don't have at least one or both of those types of side effects, at least as far as the on-label approved for use goes. The Gabapentin, and then, the topirimate after it, were being used "off-label", ie, the FDA doesn't recognize them for use as mood stabilizers, and, in fact, in Gabapentin's case, I believe had come down on it's manufacturer for trying to promote it as such. I did feel some effect from it though, but topirimate has worked better, I believe.

So, my new psychiatrist prescribes Geodon, and some lorazepam in case I develop agitation on the early, low doses of Geodon, which happens sometime, to counter it.

She told me to stop taking my clonazepam, which makes sense considering she'd just prescribed what I'm guessing is another benzodiazepine, given the "-pam" extension, but it's just a mild sedative, it's not meant for countering the stuff I do when I'm asleep at night.

I asked her, what do I do about THAT? The stuff I do when I'm asleep, like yelling, hitting, etc.?

She said, very dismissively, and in a manner that felt like it was pulled out of thin air, "Up your dose of topirimate to counter that, it will act like the clonazepam did to stop that stuff", or something like that.

I'm assuming she means to up my dose, all at night, right before bed - she wasn't very specific.

I was stunned, though; in my years of taking topirimate, my previous psychiatrist had never mentioned this property, and most psychiatrists don't prescribe clonazepam or any other benzodiazepine casually; of course, he may have been prescribing it additioally for it's anti-anxiety effects, as I was to take a tiny portion in the morning, to help keep a constant level in the blood, and then of course my nighttime dose, but . . . you'd think he would have mentioned that the mood stabilizer I was taking would have substituted for the clonazepam to take care of all the night stuff, if indeed that was one of it's properties.

I absolutely frickin' don't believe it. It's a painkiller, that some people I know take, or took, for migraines; some take as a mood stabilizer, like me, and now it's got an additional property I'd never heard of??

I was just disbelievingly stunned, that she would dismiss my concerns so quickly, with something that sounded like fiction to me. It also sounded like she didn't give a fig what night symptoms I had, either.

Later, it occurred to me, that if I up my dose back to it's mood-stabilizing effective dose of 150, to counter the night stuff (even if it doesn't work for that), then why the hell would I be taking an additional medication to stabilize me? How would I know what effect would be coming from which medication, then? It would be two medications where only one was needed.

This is why I said, at the beginning of the post, you want agitation, you got it! How am I then supposed to tell, as I start taking this medication Geodon, if the agitation is because of IT, or because I'm pissed off at my psychiatrist for being so . . . . . idiotic.

I'm going to take extra topirimate before bed tonight, and hope I have yelling, screaming, kicking nightmares, so I can call her in the morning and tell her how wrong the hell she was, and what now does she recommend?

Cause I'm PISSED, and I can't risk endless nights of possibly punching my recently operated leg (ow), or waking up to it jerking and convulsing, like I did a week after I got out of the hospital (OW), or waking up to me yelling HELP! as if I'm being raped and murdered, liked I believed I was in the nightmare, and then hearing the people in the apartment above wake up and turn over and go deathly still, listening for further signs of attack, me holding my breath against them waking and coming downstairs to pound on the front door, relaxing when they finally relax and turn over back to sleep. I'm hoping I don't throw any left or right hooks though; that behavior seems to be fairly rare, thank goodness, but then I've been on clonazepam for quite some time so who knows how rare it is . . . . . . .

Here's hoping I prove that WOMAN wrong TONIGHT, despite it meaning nasty nightmares for me.

Now, if anyone knows if that med is supposed to have this effect, I'd appreciate a comment, but . . . . yeah, I know it's the internet, grain of salt, not my doctors.