“Powerful antipsychotic medicines are being used far too cavalierly in children”

So begins the first sentence in this NYTs article.

Powerful antipsychotic medicines are being used far too cavalierly in children, and federal drug regulators must do more to warn doctors of their substantial risks, a panel of federal drug experts said Tuesday.

More than 389,000 children and teenagers were treated last year with Risperdal, one of five popular medicines known as atypical antipsychotics. Of those patients, 240,000 were 12 or younger, according to data presented to the committee. In many cases, the drug was prescribed to treat attention deficit disorders.

But Risperdal is not approved for attention deficit problems, and its risks — which include substantial weight gain, metabolic disorders and muscular tics that can be permanent — are too profound to justify its use in treating such disorders, panel members said…

….From 1993 through the first three months of 2008, 1,207 children given Risperdal suffered serious problems, including 31 who died. Among the deaths was a 9-year-old with attention deficit problems who suffered a fatal stroke 12 days after starting therapy with Risperdal. (that’s just Risperdal folks!)

Of course the first thing I did after I saw this article was take a trip over to Furious Seasons who is on it. So read his commentary there. I can’t do it better and I feel like crap—my hormones are acting up again!! Need to rest easy.

The first incarnation of my blog….

When I first started blogging I was on blogspot and it was set on private and I deleted the whole thing before I went public. It was basically just a diary.

What I didn’t remember was that I copied the whole thing into a word document. It dates from February 2004 to June of 2006. It’s very strange to read because I start it with my withdrawal journey while doing neurofeedback. I had gone off anti-depressents before I started the journal but was actively cutting down Risperdal. I cut from 11 mg to 3 mg in that time. What I didn’t remember was that I took a detour at one point when I had discontinued neurofeedback for several months and basically started feeling really bad emotionally and started adding drugs again sometime around February 2006. I added an anti-depressant and a stimulant. I talk about this in my blog these days—that is having been on these drugs and discontinued them, but I had really gotten the chronology mixed up. In any case it’s interesting to see me struggling terribly with the initial withdrawal of Risperdal four years ago after already going off an anti-depressant, and then basically giving up about a year into it and doing a whole round of med trials again which make me really sick and completely disheartened. The additional meds obviously made things more complicated.

Continue reading “The first incarnation of my blog….”

Random anger, random ramblings and incompleted thoughts

When I was at my acupuncturists the other day I basically collapsed on the table after pounding on her office door when I couldn’t tolerate sitting in the office. I REALLY needed to lay down. I can sit in recliner type chairs but an upright chair I can last in only so long and I had reached my limit at the health food store where I had lunch before I went to accupuncture.

I learned that it was the acupuncture that made my endometriosis pain almost non-existent. It is, after all, the reason I went to the acupuncturist in the first place but I didn’t expect such rapid results. Almost totally pain free after two treatments.  She told me that pain is usually the easiest symptom to treat and the rest of my hormonal issues and my basic poor health would probably take much longer to deal with.

Her diagnosis of my situation in the Chinese way of interpreting things is that my liver is in serious shape. Since Chinese medicine deals with the whole being I’m really being treated for everything my body is suffering from even though I presented saying I needed help balancing my hormones.

In any case, I collapsed on her table after being out for an hour—I was sick of staying in bed and so my husband took me to lunch. But that hour was really too much and as I collapsed on her table I burst into tears.

It ended up being like a therapy session. I told her I was dealing with so much anger. And rage. My circumstances so damn frustrating. Doctor after doctor mishandling me. Making me sicker. My rage is targeted mostly at my sister who doesn’t give a shit that I’m sick and at my last doctor who seems to have no interest in admitting any fault and is therefore just as bad as any drug pushing doctor. It’s also targeted at people in the recovery movement who think that their road to recovery is the only road to recovery and they seem to dare to think that if I only followed their way I would be well by now. One thing I’ve learned on this journey is that there are as many roads to recovery as there are people. My recovery stories page on this blog gives a glimpse of this—-all different methods of recovery…I borrow from many of their journeys, but ultimately I trust my gut. And so should anyone else struggling to recover…There is nothing tried and true for every person who has been labeled. No one thing. Perhaps the only necessary ingredient is believing that one can get better and all of these people have that and I do too, in spades.

In any case I have rage. It’s probably primal rage and it’s just glomming on to whoever is an attractive target right now.

How do I clear it out? How do I forgive my sister and my doctor? How do I embrace the giant egos of some of my recovered friends when they seem to condescend on my journey? (please don’t everyone assume I’m thinking of YOU…it’s just a couple of people really)

One thing is clear. I have no mental illness, but I’m very very physically sick. The drugs made me sick. The withdrawal made me sick. My prescribing psychiatrist who is watching me go through this process agrees. My husband who knows me intimately agrees. No mental illness…nope, just sickness caused by drugs and drug withdrawal.

Continue reading “Random anger, random ramblings and incompleted thoughts”

The weight is dropping off

I always wondered what would happen once the neuroleptics (antipsychotics) were gone. Would my body, fat for so many years, just stay that way? I suspected yes. I somehow figured my body had simply learned to be fat. There are lots of studies on obesity that suggest the body wants to be the weight it is and becomes wired as such and that is why 95% of dieters fail to maintain weight loss. I believe the studies.

I figured I was just like them.

But I guess I’m not. I am fat, after all, because of the meds and really there is no denying it. I was a super thin, active athlete before I started taking meds. I was strong and hard and had incredible stamina for long, hard, bike rides in the hills surrounding the Bay Area. I went to the gym daily too. I hiked, swam, and played tennis. I pretty much did anything athletic that came my way.

So when I got fat on drugs, it was confused by the fact that I couldn’t be athletic in the same way anymore either due to the sedating, butt-kicking effect of the drugs. I stopped exercising because I had no energy. So people (family and friends and therapists and psychiatrists, all) blamed the lack of exercise. They made it MY fault. This was so many years ago people didn’t really know how horribly weight-gaining these drugs are even if people do manage to keep exercising and then there is the fat-phobic nature of our society—those of us who are fat are always at fault, psych meds or not—all it ever takes is a bit of discipline….yeah right.

In any case right now I’m too weak to exercise more than an occasional walk and a bit of stretching and I’ve lost 15 lbs in the last couple of months as I’ve come off the last of the neuroleptics, the drugs most guilty of weight gain…interesting isn’t it?? I haven’t tried to lose and ounce. Hell no, I’m not even exercising.

Fuck everyone who said I was a lazy fat person.

Drugs may sometimes be evil, but more so are all the people who like to blame us for how they make us dysfunctional—physically and emotionally.

Okay…I’m feeling a little residual rage coming up at the moment.

Deep breath and….

Peace out….

Short and sweet update

I’m off all the “emergency meds.” It took 12 days—pretty damn awesome if you ask me! Strangely enough, or perhaps not, I slept totally shitty after the first couple of “knock-out” nights until I was completely off the Risperdal on Sunday night. Sunday night was the first restful deep sleep I had. Clearly Risperdal, while having some “knock out” properties also paradoxically fucks with my sleep. I was waking in panic and terror the whole time until it was completely out of my system. The Klonopin usage was completely unremarkable. It did it’s job and fell away quite nicely and easily.

I remain on 3 mg of Klonopin and 25 mg of Lamictal. The crisis might as well have never happened in some respects and I’m happily on much less Lamictal than before the crisis, I was on a whopping 60 mg when the rapid withdrawal process began. I didn’t completely reinstate that. Just the Klonopin and I’m doing fine thanks to some brilliant supplementation that allowed me to drop more Lamictal then ever before. Lamictal withdrawal has been one hell of a doozy in the past, leaving me bedridden for months at a time. So if nothing else this adventure did leave me in a better place towards complete withdrawal of the Lamictal.

Once again the starting point for my psychiatric drug withdrawal 4 years ago was 72 mg of Concerta, 200 mg Zoloft, 50 mg of Seroquel, 11 mg Risperdal, 400 mg of Lamictal and 3 mg of Klonopin.

I’ve been on a total of 37 psychiatric drugs at one point or another over a 23 year period. Most of the cocktail I was on when I started the withdrawal I had been on for years—save the Concerta which was my last attempt to fix the mess the drugs made of me with yet another drug. Concerta is a stimulant and I was trying to wake up! I was only on it for a couple of months and was misled by my doc to believe there was no such thing as withdrawal symptoms from it. That was my first experience that led me to take the researching of withdrawal into my own hands. I was madly suicidal for about 3 days when I cold-turkeyed off the Concerta. Something I’ve learned since then is extremely common for any stimulant.

So the result of that first withdrawal gone bad led me to discover that all psych meds have potentially nasty withdrawals and I’ve been unlucky enough to have had a rough time with most of the meds I’ve been on. I did manage to get off SSRI’s and SNRI’s more than once very easily. I don’t have as hard a time as some do with antidepressants. I also took it very slowly.

Also the Seroquel went real easy too considering I was on 11 mg of Risperdal I just didn’t really feel it much. The rest of the journey though has been pretty rocky but it’s clear that I’ve always been moving in the right direction with lots of indicators that my mind will be clearer and I won’t be so irritable once I’m off the drugs.

I temporarily got seduced into believing it would all be over much more quickly than it’s going to be, but I feel good again and I’m out and about doing stuff, albeit with lots of breaks and rests.

I can hold out for the long haul now. I can still taste success in my mouth. Granted I don’t always feel chirpy. No, not at all as my previous post indicates.

I’m taking a break from drug withdrawal now. I’ll just have to see how long. Could be several days or a few weeks. We’ll see.

when things fall apart…

In recent days Gianna’s story took a turn too intense and painful for her to tell. It falls upon me, her husband, to explain what happened.

As regular readers here will already know, for some time now Gianna has been working with an orthomolecular doctor who through a combination of modalities was able to accelerate the process of withdrawal from Risperdal, Lamicatal, and Klonopin.

About three weeks ago Gianna came off Risperdal. That brought to an end 20 years of taking neuroleptics. The horizon of becoming completely psych-med free then seemed to be a matter of months away. But if the process had over the proceeding weeks been accelerated, it soon took on an unprecedented speed.

Under her doctor’s direction, Gianna’s discipline of careful tapering, withdrawing from one drug at a time, suddenly switched to one of giant leaps as in a matter of days — on the understanding that the indications were that her meds had become “toxic” — she cut back and then came off them completely. In the space of two weeks she cut down from 60mg of Lamictal and 3mg of Klonopin, to 20mg Lamictal and 0.5mg Klonopin and then in one step… nothing.

Gianna’s reaction was a mixture of elation and trepidation. How could this happen so fast and upturn virtually everything she thought she had learned over her intense research and the evidence from the reports of others?

Continue reading “when things fall apart…”

Can’t keep the info on generic Risperdal straight

I’ve been trying to follow when Risperdal will become generic. I’ve done two posts on the subject. First one on Risperdal going generic this month, which also includes my concerns about generics in general. And then one later on with new information I got saying it would not be generic this month.

Pharmalot whose credibility on these issues is far greater than mine has some much more reliable info today. Perhaps the fact that J&J’s Janssen unit is making their own generic will make my initial concerns in the first post not an issue??

One thing is clear, the generic is not available on the market this month in any case, but the approval process seems to have moved along.

Apparently Risperdal will be generic for some indications as it is still under patent for others. I wish I knew what all that was. The FDA report says:

The labeling of the generic risperidone may differ from that of Risperdal because some uses of the drug are protected by patents and exclusivity.

It does nothing to elucidate just what indications will be covered and how it will effect people who need to buy it. My google skills aren’t good enough for me to get to the bottom of this. My sincere apologies.

Being that I’m on .45 mg of liquid Risperdal now and still tapering, AND I just bought a 30 ml bottle that will last at least two months and more likely much longer, I’m hoping I won’t have to buy it ever again and the whole generic issue will be a moot point! Yes, I hope I’ll have tapered myself completely off by the end of this bottle.

Arrival of the parental unit

Talk about bad timing. I got my period about two hours before my mom arrived. Granted, I knew I would be premenstrual and menstrual while she was here, what I didn’t expect is that this is the worst period I’ve had since January.

As most of you know if you’ve been reading my blog for any length of time I have endometriosis. This is a condition that causes infertility and severe pain during menses and sometimes all month long. I’ve had two surgeries for it and it’s come back each time. When I was 16 before the surgeries I treated it with hormones to deleterious results. Hormones make me crazy.

Then when I was on Risperdal I got the side effect that causes the period to cease: amenorrhea—caused by the increased prolactin levels that Risperdal creates. I always considered that a blessing of sorts, though of course it was not a good thing for my body and now in spite of the pain I’m glad my body is doing what it is supposed to do—it’s unhealthy to have elevated prolactin levels.

In any case my period returned about three years ago once I got my Risperdal dosage down to 4 mg from 11 mg. I hadn’t had a period in 8 years. They started out painless but within a year the endometriosis was raging again.

Continue reading “Arrival of the parental unit”

“Symptoms” and acceptance

The symptoms I am having as a result of withdrawal are first and foremost physical. I’ve been rendered physically disabled. This is a result of my particular body and history on meds. Not everyone who deals with withdrawal will get physically sick like me.

The psychological symptoms or psychiatric symptoms I deal with are no worse than what I’ve dealt with at various times ON a complete med cocktail and in fact some of my symptoms have improved greatly, like anxiety. And as I refuse to medicate the symptoms away they become easier and easier to deal with because I am forced to accept them. Once I stopped searching for the quick fix in a pill, which ironically led to more pain, I started simply accepting my reality. This makes living with pain much easier and is the first step to healing in my mind. I believe the symptoms I have now are primarily caused by the withdrawal itself.

I suffer at different times with anxiety, irritability, and depression and despair—mania is not in the picture and actually has not been for more than a decade—some bipolar I am. The symptoms I do have are much worse when I’m premenstrual and the despair kicks in from time to time if I’m unable to get out of bed for any length of time. I feel like I’m missing out on life. Continue reading ““Symptoms” and acceptance”

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