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BuyerBeware
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07 Nov 2013, 9:47 am

Not to put too fine a point on it, Risperdal almost killed me. And not from neuroleptic malignant syndrome.

I started out in a severe acute depression that had little to do with Asperger's, other than the usual theme of being demonized and kicked for faux pas (and, having read all the "wonderful" research between 1998 and 2007 or so, already seeing myself as a monster). After years of self-enforced nonpersonhood, I blew my top in a psychiatrist's office. I had, in four months, endured my stepmother having a massive stroke, being forbidden from going home to help my father, losing my father in a rather ghastly and tragic fashion (he died of heart failure and rotted in his bed while I tried to get someone, anyone, to check on him from 1,000 miles away), trying and failing to care for my stepmother, being threatened with losing my children, being forbidden from seeing my stepmother by her psychotic sister, losing a pregnancy, and being repeatedly berated for not keeping a smile on my face through it all because, after all, "we all have problems, so don't be selfish."

So one day in December of 2010, I sat in a psychiatrists' office and RAISED MY VOICE. I shouted-- that was all. I did not hit, or spit, or throw things. After five years of subjugating all that was important to me, in the middle of the nightmare I described above, I SHOUTED in a psychiatrist's office...

...and I left with a prescription for Risperdal, to be taken "as needed, up to six milligrams a day."

The pharmacist instructed me to take .5 miligram three times a day for the first week, 1 miligram 3 times a day for the second week, and 2 miligrams 3 times a day every day of the rest of my life thereafter. My husband and I talked it over and decided this was not in agreement with the psychiatrist's instructions, called to question it, and never got a call back.

Well, to save a lot of reading, you can "Find All Posts By BuyerBeware," narrow it with a keyword search for "Risperdal" or "risperidone," and read my horror story from the pits of Hell. Long story short, I took six miligrams a day (the maximum dose, I believe) for between 6 and 8 months. At the end of that time, I was very close to being profoundly autistic, borderline catatonic, in debilitatingly agonizing pain, alternating between total apathy and violence, developing delusions, suffering severely diminished cognitive function, and losing verbal function. I did not "feel better." I did not even "feel nothing." I was locked behind the medication, still suffering, unable to ask for help.

One Sunday morning in August of 2011, I marshalled everything I had left, skipped my meds, and drove myself out to Raccoon Creek State Park with two tanks of helium, a box of trash bags, some siphon tubing, and the intent to die rather than live like that any more. But for a flat tire, I would probably not be alive today.

Some effects stopped quickly. After a week in the hospital, on fluoxetine and off the risperidone, I was speaking coherently again-- slowly, but coherently. I was able to stay awake. I was no longer peripsychotic. I thought very slowly and deliberately, but I was thinking again. I had gone from struggling to fix a bowl of cereal to burning cookies, from being unable to navigate the grocery store to being able to find my way out of the woods and operate a motor vehicle.

There would have been no way in Hell I could have cared for my kids-- if we hadn't lived in a one-room apartment that summer, they would probably have died-- but I could stay by myself for a day and not lay hungry in my own filth. I could clean a litter pan and sweep a floor and wash dishes. I wasn't well, but I was ALIVE again in fairly short order.

More than two years after stopping the medication, I can say that there have been some lingering effects. I don't know whether it's the drug or the psychological damage of the experience. I am better, much better, but I am not ALL BETTER.

It took over 18 months for me to fully recover cognitive function, to start "thinking like myself again," though I do not know if that's from the medication or a result of how throughly a couple of bad therapists destroyed my self during the months of the nightmare.

I had severe large muscle pain for about a year, sometimes so bad that it would prevent me from sleeping or cause me to take over an hour to get out of bed in the mornings. I have some lingering issues with pain in my shoulders and thighs, but I do not know if this is due to the Risperdal or to the fact that I'm 35 and have had 4 live births.

I had small facial tics anyway; they got significantly worse. I have-- and will have for the rest of my life-- twitchy eyes, involuntary twitching of my nose, and a twitch on the left corner of my mouth. These are the LEAST of my concerns. They're sort of cute-- I can pass the nose thing off as Samantha from Bewitched, and camouflage the mouth issue with a quick smile afterwards.

I find that I am more prone to lose my temper, and have to fight down an urge to violence more often, than I ever did before Risperdal. I've hit my children in the last couple of years-- it's getting better, it's been MONTHS and MONTHS and MONTHS and I am starting to feel safe saying it will NEVER HAPPEN AGAIN-- but before Risperdal, I could ALWAYS walk away before hitting was a remote possibility. After Risperdal, the threshold is lower (improving, but still lower), the window in which to catch it is smaller (growing, but smaller), and the recovery time is longer (used to be about half a cigarette-- now it's 2 to 3 slow-burning 100's).

I don't know, again, how much of this is Risperdal and how much is PTSD from, basically, the nightmare. I feel as if I have had to rebuild myself, from the ground up, from spare parts, and then learn how to live all over again. If I were standing in that psychiatrist's parking lot with the knowledge I have now, I would not have walked in the door.

Risperidone has its place. I'm sure of that. But it's used too freely, too much, too often, and too lightly.


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BeggingTurtle
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07 Nov 2013, 9:37 pm

Tracker wrote:
I have been wondering what the long term effects of risperdal is on autistic people. Mainly if it affects their ability to think clearly after the medication has been stopped. I know that the medication acts as a sedative and reduces a person's ability to think clearly, but I wonder if this effect still remains after the medication has been stopped.


Kind of. At least for me, it wasn't as much as a sedative that people make it out to be.

Risperdal didn't affect my decision making, but it definitely made me very moody. Every time I laughed, I felt like I couldn't stop, but then I could slip into a darker depression in like a few seconds. I also had a great tic reduction (not complaining) but when it wore off, I felt really vulnerable every time a tic came and they got worse then from when I was 10 (I took 2 mg a day for a long time). It also made me more hungry, so that's a good thing because I have some malnutrition issues.

Medication can make you really susceptible to stuff you don't want. It took a few years for the symptoms to go away. My tics adapt super quickly so no point in using Risperdal again. To be truthful, I'd rather not.


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CharityFunDay
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07 Nov 2013, 10:06 pm

I was on 6mg of Respiridone daily, and although it gave me a sort of semblance of emotional stability (i.e., I was zoned out most of the day) it also made me become seriously obese.

So I stopped taking it. Pros: My weight has dropped dramatically. Cons: I now experience some degree of bipolar behaviour, although not enough to interfere with my day-to-day life. I just occasionally go a bit 'hyoer' for a while, and then I slumo for a while after that, but most of the time I'm stable and generally inclined toward feeling rather happy-go-lucky and glad to be rid of it..



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07 Nov 2013, 11:52 pm

I've been on risperdal for a few months, recently doubling the dose to 1mg daily.

Massive positive effects on anxiety issues.

Cos I know that it, and 2 other meds I'm on, tend to weight gain, I am watching weight carefully. So far have lost 8 pounds.



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08 Nov 2013, 12:02 am

A lot of these medications especially the antipsychotic type ones, outside of old standbys such as lithium, can have negative effects on people with autism. While they may help some people it can be a real crapshoot. The 'wild mood swings' and 'tics' are from people not understanding how autism works and manifests in people - which is different from how schizophrenia works and manifests in people.

BTW Daniel. Meltdowns are not tantrums. People have meltdowns for sensory and not enough spoons reasons and things like Risperdal could make them worse. It could also give you issues at work if you have a problem with switching meds. I've almost gotten canned from work through trying different meds and the adjustment stuff (I work in finance and it's very easy to make mistakes).

Tantrums are a child's way of getting attention. I feel this is an area of autism that you should probably look at some more instead. This is from someone who's gotten (I think?) concussions before from meltdowns, and keeps strong makeup and wigs on hand to be presentable at work. And although I've tried these medications like Seroquel before, it just made it worse.

If you find something that works, order a year-long supply from it from India and hold on to it as best as you can. Just my $.02, best of luck. Rather than worrying about 'long term effects'. It is better to worry about the effects of losing a job or something like that, or having to switch to something expensive.


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legomyego
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08 Nov 2013, 5:13 am

i personally believe it is not a good idea to take...just given the research i did and the increased death rate+ brain damage did not sound good...

if you can use it and if helps more power to ya....we all must do what we can.



AdamAutistic
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08 Nov 2013, 12:29 pm

i just use it as a sleep-aid. it works great.


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legomyego
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08 Nov 2013, 1:15 pm

probably low dosage is a good idea



catboy777
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09 Nov 2013, 8:39 pm

I'm a low dosage of it.