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Morphologie

Morphologie: Risperidone nightmare

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Morphologie

Hi, I'm Morphologie. Two months ago I was put on risperidone .5 mg twice per day in the hospital. This was/is my first time being on antipsychotic medication. I'm not schizophrenic, I have a mood disorder, depression, anxiety and social phobia and body dysmorphia. I wish to God I had never gone to the hospital in my hour of desperation and been put on this stuff, none the less, here I am. :(

 

Initially I felt okay about risperidone. It seemed to calm me, and slow down my thinking and make me less reactive emotionally. Things I liked, but came at a price. I was in the hospital for five days. After coming home from the hospital, I became aware of side effects I could not tell my 5 days in the hospital, maybe due to all the distractions of the different environment, but after coming home, they were apparent. Pain in my upper and lower spine, head forwardish, "hunching over" posture, odd gait, increase in feeling like people were talking about me or laughing at me.

 

So, I decided to reduce the medication on my own by 50% and I did not have any issues at that time. I was then on that reduced dose for approximately 6 weeks, and did okay on that, but then I tried to come off of that, the .25 mg twice per day, and OH MY GOD, crisis. I thought since it was such a low dose, I wouldn't have any problems, but I became severely suicidal, I lost my judgement, I got anxiety and depression the likes of which I have NEVER before experienced.

 

I went to the hospital again, because I had become severely suicidal, anxious, having difficulty talking, feeling pressure in my head, and a squeezing or seizing sensation in my brain. This was all very disturbing, traumatic even, but even worse than that, everyone at the hospital treated me like I was nuts, and that all this was just "in my head" or how I was normally if not medicated, just a manifestation of my pre-existing anxiety.

 

Even though the level of what I was experiencing was beyond anything I had experienced previously. NO ONE CARED. I was just the "naughty patient" who went off her meds. Even the hospital chaplain I asked to talk to in my darkness, told me off and told me to take whatever they gave me. All of my experience was considered to be "anxiety and somatosizing." The psychiatrist said risperdone could not do that and tried to put me back on FOUR TIMES what I had just come off of. FOUR TIMES. :o

 

I think I may have tardive diskynisia now because of the grimacing that they chalked up to just my anxiety even though my face was contorted in (psychic) pain and I had a hard time thinking, talking, and deciding. They don't even know me, and did not believe me that some of this was effects of withdrawal from the drug, they said it was me. That the drug couldn't do that. The psychiatrist at the outpatient program said the same thing. "Risperidone doesn't do that."

 

When I refused to go back on risperidone, I was given seroquel, which had even worse side effects for me than the risperdal, and I also was started on Celexa and stopped it and refused it after two days because it just did not feel "right" to me and was making my sleeping problems even worse.

 

Because of refusing meds, the psychiatrist almost sectioned me and made an involuntary patient where they could force me to take anything they wanted to, because of my severe difficulty making a decision of what and whether to take more drugs, and my anxiety was through the roof and I could not stop pacing and suffering. I could not stop pacing, my legs hurt I was pacing so bad, with a face contorted in anxiety and (psychic) pain. I had a hard time thinking and talking. I escaped being sectioned by telling the psychiatrist I wanted to find a natural solution, in the midst of my perilous state of mind.

 

I can't believe the way I was regarded and talked to, the lack of personal power I experienced. It was truly terrifying. Now I am home and the face contorting and insane anxiety, depression and insomnia was not lessening, so in desperation I put myself back on the .25 mg two times a day of risperidone I had left and I am starting to find some relief, finally the insane anxiety lessened, but I'm not out of the woods yet. And I fear I may have tardive dyskensia, because of what I have read and the face contorting, even though NO ONE even suggested that to me at the hospital or the mental health treatment center I go to. I have been almost entirely alone with this. :(

 

The thing I can't believe is how they can so sure of themselves say "risperdone can't do that." People have died in drug trials, what make them so sure risperidone "can't do this?!" The level of invalidation, along with the mental and physical pain of this has been truly traumatic.

Edited by Petu
added paragraphs for readability

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lexicon

I am saddened that you had to endure all this distress ..:(

I do not know how to offer you any help for what you are going through, but only to tell you that I wish you wellness soon ..Even though today may look bleak, tomorrow the sun will shine again ..xx .. Lexicon

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Finn

Hello friend *hug* I am so sorry to hear about your traumatic ordeal. It is inexcusable how you were treated. I truly wish you better days and a recovery from the personal violations you endured at the hospital and your drug reaction. If there is anything we can do on this site to help you, please speak up. Good luck and best wishes.

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Morphologie

Thank you, lexicon and Finn. I really appreciate it.

 

I had a pretty good afternoon compared to what I have been having with the pacing and the extreme anxiety, but now that it's about 1 a.m. I am starting to suffer again.

 

The last dose was ten hours ago.

 

I thought it was best to go back to the dosing schedule my body was used to, which was once in the morning and once in the afternoon, but normally I'd be asleep right now, or I would have slept for about 6 hours before waking for a few hours, but I developed insomnia after being off the drug a few days.

 

I at least got some good rest/relaxation this afternoon/evening, which I haven't been able to do the previous several days without ativan and ambien in the hospital and ambien only at home because they don't prescribe ativan to people for home at the hospital.

 

But I don't want to take the ambien anymore, because it only gave me 3 hours of sleep anyway and I want to give my body a chance to resolve the insomnia without taking ambien now that I'm on the risperidone again.

 

I had only been taking ambien about a week. I want to stop that because I don't feel well when it starts to wear off and I know it's addictive and it seems to me the longer I take it, the more the potential for developing insomnia from just being without it.

 

My eye is also twitching. This is so hard. I don't know why I didn't respect the power of this chemical to mess me up. I just trusted the doctor's judgement because I felt at the end of my rope at the time. Mistake.

 

I guess I thought since I was only taking a small dose and had only been on it for six weeks that it wouldn't effect me like this. That was not true.

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Morphologie

2:55 a.m. I did some yoga, a little pranayama, ate something, as my blood sugar seems to suddenly drope, and I'll be suddenly ravenous at any time. I also took some calcium. The calcium definitely helps me feel calmer, but I wish it would bring sleep.

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Morphologie

I did sleep for 2 1/2 hours. I'm grateful for that. I feel ill, upon waking. Nauseas, hot, all over sick and flusish.

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tezza

Hi Morphologie,

 

Welcome to the site, I'm sorry you needed to find us.

 

I have experienced much of the same as you from Risperidone. I was taking 1mg at night and successfully cut that in half for a few months. My psychiatrist would not give me a lower dose than 1mg and I didn't think I could break it any smaller. Eventually, I thought I could leave it off and I went into extreme depression, almost constant panic attack, insomnia and could not force myself to eat one bite of food! I also had some paranoia. Lots of other symptoms, including muscle twitching and tinnitus.

 

I lost 20 lbs in the two week period that I didn't take it. I finally took .5 mg and about 45 minutes later, I ate for the first time in two weeks.

 

I have been taking liquid Risperidone since January 2012 and have had to taper it VERY slowly! I had to insist that my GP write it for me, I had to show him a 1mL oral syringe to get him to do it, even then. He didn't know the syringe existed and thought it would be impossible for me to measure such a small dose.

 

The medical profession is lacking knowledge in a big way!

 

If I were you, I'd get as stable as possible and then try to get liquid to taper from.

 

Don't blame yourself, if you had been better informed, you would have made different choices. It's not our fault.

 

Ambien didn't help my insomnia, either! Nothing did! I did finally start sleeping better after a while back on the drug.

 

You will get better, it just takes time.

 

{{{HUGS}}}

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Altostrata

Welcome, Morphologie.

 

I am concerned about your obvious adverse reactions to the antipsychotics. Are you near any of the doctors in this list http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/

 

If not, phone the nearest one, say you're having a movement disorder from a drug, you need help going off, and can he or she recommend someone near you. Stay away from the hospitals.

 

You need the risperdone liquid to titrate your dose http://survivingantidepressants.org/index.php?/topic/1716-tips-for-tapering-off-risperdal-risperidone/

 

Any MD can prescribe the liquid, do you have a good relationship with your GP?

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Jemima

I'm glad that you found us, Morphology, and so sorry that you've gone through this nightmare. Please do follow up on Alto's advice so that you can get off the Risperdal as quickly and painlessly as possible

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Morphologie

Hi tezza, Altostrata and Jemima.

 

Thank you for your posts and for your caring. I've tried and then stopped reinstatment 3 times now. This is the third attempt. The reason I stopped was because certain things worsened and I got scared. It felt like I was getting encephalopathy or something, so much head pressure. But then the horrors of being off drive me to try going back on.

 

I wonder if I shouldn't just stick with it for at least a week or something, despite any worsening?

 

I know you know how bad this is. :( Akithisia with severe suicidal ideation. The way I have survived the past couple of days was by being with women of strong faith who ministered to and prayed for me. Even then, after that going home and not sleeping and pacing all night and thinking there is no way out, I've had days of pacing and thinking and thinking there is no hope, no way out, it's a hell I feel trapped in, that death was inevitable, thinking desperately how, how I can kill myself.

 

I have never experienced such suicidal like this before. It's more like I've entertained the idea of suicide when down and discouraged but never like this. I googled hit men, I though of and looked up ways, I cut myself with a razor but couldn't do it. I still have some healthy fear of death/pain/the unknown yet have felt so full of despair, terror and intense mental suffering and lack of hope when reinstatement doesn't seem to be working.

 

Today I am going to see a nurse practitioner today who at least believes me that I am truly in distress from this and it isn't just all in my head. Others involved (Pdoc at intensive outpatient program I go to and doctors in the hospital blamed it on my mental health and what they call somaticizing.) What a poor situation.

 

That's a danger of labeling. Then you become a "thing" instead of person with feelings who is capable of valid perceptions. It's terrifying actually. Anyway I hope very much she can help. I am willing to try different drugs, but not any more antipsychotics, but if something can help I'll try it because the situation is critical.

 

I'm not sure if I should try sticking with the reinstatement to see if it works, or stop it again. Yesterday was the first day it was of my system and I got hit with panic attacks and akithisia and this inner insane feeling like I was scared and tense out of my mind.

 

When I took it again in desperation yesterday afternoon, one thing it did help with was lessening the facial dyskenisia. I guess antipsychotics can both cause and then mask dyskenisia.

 

My forehead no longer looks so severely like the opposite of botox for a smooth= forhead. Haha. Well I am glad I still have some sense of humor. Thank you, God.

 

Oh, who knew??? Who knew such hells existed for real on this earth? :( These past couple of weeks I've seen so much hell. Life devoid of all the good parts. People trapped in hells in the psyche ward. Disabled and elderly people who can't speak up for themselves if drugs go wrong or are withdrawn rapidly. I feel for their suffering. This makes me angry at the evil in the world. :angry:

 

I'm going to keep reaching out. God bless you all and thank you for this site. For the victims who have been cast aside after devastation.

 

It seems like it's viewed like in that story "the lottery." It's accepted that taking pharmaceuticals is like a Russian roulette of sorts and if you happen to be "one of the unlucky ones" then too bad for you.

 

I am finding a lot of solace and comfort in being around women and men of strong faith right now who are trying to live by strong faith and principles. They are saving my life.

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tezza

Hi Morphologie,

 

I'm so sorry for what you're experiencing! It seems there's no easy answer but if being with men and women of strong faith and prayer helps, keep doing that.

 

I went through a long period of wanting to die, too. I googled ways, painless ways, it seemed there were no painless ways listed on the web. Plus, like you said, there is fear of the unknown. Now, I don't want to die anymore, I just want to be off the medicine and well.

 

It is good for me to go to church and be around people full of faith, too. Although, I don't let them know what I'm going through anymore. I just smile and act as though all is well! I'm much better because there was a long time that I couldn't hide how depressed I was, it showed on my face.

 

Just know, you are not alone in this hell. We all care because we understand and the only people that can truly understand are the ones that have experienced the same.

 

Love and hugs!

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Morphologie

I tried reinstating 3 times but I was having intense inner head pressure and what felt like my brain was seizing and squeezing. I also developed hypothermia and difficulty speaking for myself and was very ill and my symptoms were not improving. I thought I may have been developing neuro malignant syndrome I was very sick and scared and had to get off it.

 

I got severely suicidal again and tried going to a different treatment center, other than the hospital but my experience was the same. I was threatened with being committed if I did not take another antipsychotic and I felt I had to, so they couldn't do worse things to me by law without my consent. I had horrible neurological symptoms from the zyprexa, and again, they did not consider them reasons to not take it. I was put on zyprexa, celexa, trazodone, klonopin, and cogentin. I stopped taking the zyprexa and celexa as soon as I got home as I felt they agreed with my the least, but I kept taking the others because they all were said to help with akathisia, which had been making me seriously want to kill myself.

 

So now I'm stuck on more drugs, more traps, little relief, no answers for how to be okay. I feel very little happiness or pleasure in anything, my brain feels very screwed up. I feel hopeless. I have very little money or resources, I can't afford doctors other than in the public health system. I feel like no one cares and there's no cure and I don't want to live anymore. I find myself wishing God would help me die gently as painlessly as possible. If Dr. Kavorkian was available, I would go to talk to him.

 

Is there any hope for those who were not able to safely reinstate? I feel like there's not hope now for me, maybe ever. I just don't find any success stories on the web without reinstatement. I wish I'd been strong enough not to go back to a treatment center, but seriously all I could do was pace all day and half the night and think of how to kill myself, that's how bad it was.

 

Does anyone have anything hopeful to say about those who could not successfully reinstate? I need some hope. :(

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mammaP

I really feel for you but can't offer any advice except that if anyone can help

it's the people here. I've been in that place too, researching how to kill myself,

and attempted it too.

Thankfully my own 'rule' was that I couldn't make a mess

and it's that which actually saved my life. I've been in psych hospital several

times and been sectioned, filled full of toxic drugs that stole years of my life

so can relate to what you are suffering.

 

Get through the next hour as painlessly as possible,then the next. Even getting

through a day can seem impossible but an hour can be tolerated a bit more.

Listen to the advice here, they know what they are talking about. It will be hard

but you CAN DO IT and everyone is right behind you.

 

Hugs from Mamma P

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Morphologie

Thank you mammaP. Another day. :( I am so seriously depressed I don't know what to do. I hate myself I hate my life I want to feel some peace and safety. I never feel that anymore. I am desperate. I'll try getting through the next hour as painlessly as possible.

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Morphologie

Also I don't know how to proceed since reinstatement was unsuccessful and I am still not stable on these meds I was put on to get me stable. I wish to be stable very badly.

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Morphologie

I feel like I'm dying. I wish I had an answer. I'm tempted to take one of these antidepressants I have at home because I am not coping.

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Altostrata

Are you near a major medical center or university? Can you phone psychiatrists and explain you are having movement reactions to these drugs and need help going off? You may have to phone quite a few, but in your part of the US you should be able to find a psychiatrist who gets it.

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Morphologie

I'm trying the problem is insurance. They don't take my insurance and I can't afford to pay them. I'm going to try and get a referral to a movement disorder specialist on Monday. I feel like such hell though. I wish I knew what would help.

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Morphologie

Has anyone gotten better who was not able to successfully reinstate? :( I have notseen/heard one success story with that.

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Altostrata

Yes, people do recover. It take time and patience. Hang in there.

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Morphologie

Yes, people do recover. It take time and patience. Hang in there.

 

Thank you very much. I need some hope to hold onto.

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Morphologie

This is my situation now:

 

I am on 100 mg trazodone at night

.25 mg cogentin at night

.90 mg of clonazepam a day

 

I do not feel well. I feel severely depressed, often anxious and I'm not stabilized. I'm already off the antipsychotics but I think the clonazepam is masking most of the movement issues. I'm not sure what to ask for or say.

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Altostrata

Morphologie, you are in a nightmare now, but take heart -- it's only been 2 months. It will take time for your nervous system to heal, many more months. You need to be patient. Meditation is a good thing to take up for this.

 

You'll get through this, but you will have to deal with doctors differently in the future. You are clearly highly sensitive to the effects of neuroactive drugs, and you should make sure any doctor you talk to understands this. To take care of yourself, you will need to research your health conditions and any drug that might be recommended for you.

 

You will gradually get free of these drugs, don't worry.

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Morphologie

Thank you. I will be working on those things. Alto, I've only been on Trazodone for 27/28 days, almost a month. Do you think I could get away with a faster taper or do you think it must be 10% per month? I really want to reduce this stuff, I think it's making me sick. Yes, it helps me sleep, but as soon as I wake up, I am so unhappy to be awake/alive. Plus the past two nights I got nausea around the same time, 6 ish both nights and I ended up vomiting later. I don't know what is causing that. I also became very pale.

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Morphologie

Another thing is that I feel like I'm going to pass out when I get up and I can't tolerate heat.

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Altostrata

Thank you. I will be working on those things. Alto, I've only been on Trazodone for 27/28 days, almost a month. Do you think I could get away with a faster taper or do you think it must be 10% per month? I really want to reduce this stuff, I think it's making me sick. Yes, it helps me sleep, but as soon as I wake up, I am so unhappy to be awake/alive. Plus the past two nights I got nausea around the same time, 6 ish both nights and I ended up vomiting later. I don't know what is causing that. I also became very pale.

 

You might be able to go faster than 10% per month, but I'd try a 10% cut for your first couple of decreases.

 

6 a.m. or p.m.? When do you take trazodone? When do you take your other drugs?

Another thing is that I feel like I'm going to pass out when I get up and I can't tolerate heat.

 

I had this, it eventually went away. Go easy on yourself, baby your nervous system. You will heal.

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Morphologie

I've been taking 1 mg clonazepam in the morning, and trazodone and cogentin at night, but yesterday I tried taking .5 clonazepam in the morning and .5 at night instead. The result was I was less depressed during the day, and I slept through the night, but upon waking I do not feel rested. I actually feel like I didn't sleep at all. On the other hand, I woke with a gentler feeling overall, not that "wretched to be alive" feeling so maybe the nighttime clonazepam mellowed that metabolite of trazodone that causes agitation? Or maybe I had been going through clonazepam withdrawals early morning. I don't know. It calms seizures. I wish I felt rested, though, and I don't know if the day will be worse like this. I guess I will find out. Last night I read that clonazepam reduces REM sleep by 80%, so I don't think that will be my solution.

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Altostrata

Are you nauseous at 6 a.m. or 6 p.m.?

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Morphologie

6 pm. And now I got nausea on the bus today going to a Dr.'s appointment. I got sleepy and was sort of dozing on the bus and then I got very nauseas. It continued with motion of the bus. :( I'm also having severe gastrointestinal distress. It hurts so bad and then I usually get nausea afterward.

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Morphologie

So the recommended reduction is 10% per month? So then I would have to wean off trazodone for 10 months just to get over one month of use of something I don't even like? That makes me so sad. I hate these stupid drugs.

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Altostrata

Since you've been on it such a short time, you might be able to go faster than 10% a month, but try a 10% reduction at first to see how you do with it.

 

Since the nausea happens at a set time every day, that suggests something you're taking earlier is causing it. It could possibly be trazodone's evil active metabolite affecting you.

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Morphologie

Yeah, I really don't like the trazodone, I think it is the one making me sick. Here I am in the morning feeling that sickish anxious feeling. Something wonderful happened last night, though. I fell asleep around 5ish, without taking anything and didn't wake up until midnight. I didn't feel sick when I woke up, either. I did however, take the trazodone then, cause I didn't want to get a rebound reaction. Felt so good to sleep without the stuff for awhile. :D

 

Thanks for your help. This has been the worst thing I've ever been through in my life. The second worst thing was also medical/pharmaceutical related, when my only child was injured by a vaccine. Sometimes it's hard to stand apart and say no to these things without support.

 

The only reason that was second worst was at least I still had most of my mind. This experience of losing my faculties from antipsychotic withdrawal and administration was terrifying.

 

I think that sometimes psyche meds can make mental patients out of people who didn't have to be that way. I saw two people get worse after medication when I was in that last facility. Then there were the antipsychotic injured schitzophrenics who paced and paced all day.

 

I was afraid that was what they were going to turn me into if I got made involuntary and they could "give me whatever they wanted." They sure have a lot of power, the doctors at the treatment facilities empowered to "diagnose and treat." There's not nearly enough disclosure of risks and exploration of alternatives. I had withdrawal emergent akithisia and not one professional used that work. I had to look it up and learn what was happening to me after getting out of the hospital myself. I really don't like the way they operate.

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Altostrata

Sounds like you might be able to taper trazodone by quartering the tablet and reducing by 25% every few weeks.

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Morphologie

That would be nice. :) What I'd really like to do is taper 25% per week. But that would probably be too fast.

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Altostrata

All you can do is try something and see how it works. A decrease every week is too fast, withdrawal symptoms don't always show up right away.

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Morphologie

Hi. I agree with you now Alto. I tried a big drop in decrease and got suicidal last night. I'm back to 100 mg trazodone again. I slept last night. Woke up feeling terrible, but slept. I do know now that the tremors I have at night are due to the traz though because when I reduced it they were gone.

 

The hard part about this, is that I am not "okay" as it is. It's not like I'm stable but just want off these meds. I feel unhappy to be alive almost every day. I have not recovered from the risperidone withdrawal, not sure my brain ever will, and the klonopin and trazodone are barely holding me together. I feel sick every day. I think about death every day. And now I'm stuck on two meds that I don't like and are both making me sick in some way. what the hell should I do?

 

I have a meeting with a new prescriber next week and I don't know what to ask for/tell her. I want off the trazodone and klonopin but I'm so miserable already, my existence is poorly.

 

I also had a doctor's appointment scheduled, a naturopath who specializes in hormones and also works with dessicated thyroid next week, because I had some success with dessicated thyroid in the past for depression and social anxiety, but it'll take basically all my savings to see him, (I don't have a lot of resources) and then I'll have to make payments i can't afford whereas it might not even help. I mean, I believe I am having thyroid and hormone issues, but my hurt brain from that risperidone withdrawal is the main issue right now and does it make sense to try and address the others when I have this brain issue going on? And meds that will probably interfere with everything. I'm so mixed up as to the right way to go to heal.

 

Do I try different/more drugs? I can barely live the way I am. What do I do? :(

 

I feel like it was mistake to go on the klonopin and trazodone, but I was going to kill myself and I couldn't cope and they put me on it amongst other things, but I only kept these up because I read these help for the acute akithisia which was driving me to want to die, but I feel I've lost more of my brain now and cognitive abilities now that I"m on the trazodone and klonopin. I feel so sick.

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