Home, About, Contact Us, FAQ

Has anyone else had Neuroleptic Malignant Syndrome?


#21

I think schizophrenia treatment is way too focused on meds. It’s been my experience that meds are pushed at all costs. They are wonderful for some but they are not easy to take. If they don’t work you are sort of cast aside because there’s nothing they can do. We need to be empowered more and be guided to manage what we have. It takes a lot of power from you if you’re told your brain is wrong

absolutely agree.Its not easy being hyper sensitive to meds. In many cases, drugs are even being pushed down the patients throat with no regard for that persons health. A retarded view on human rights and existence.


#22

While I agree that this still happens, I’d say that the professional literature is so full of noise about it now that it’s trending downwards, albeit too slowly for many. Sigh.

My guess is that the docs and the med manufacturers are getting tired of being sued.


#23

It often takes a caregiver for doctors to listen. This I believe is something that can be made better.


#24

If the f-ing HIPAA patient privacy laws weren’t so over-reaching, there’d probably be more of this. Unfortunately however, there’s a %age of “caregivers” who are co-dependent inducers of worse illness and need to be kept at a distance from both pts and docs. It’s a tough balancing act currently getting in the way of what you’re suggesting. I do see hope on the horizon, as well as numerous docs who have figured out ways to get around the HIPAA restrictions, however.


#25

I was reading something about two weeks ago that really hit something for me.

It was an article about gender transitioning. It went on to talk about the different ways people are counseled. In many “disorders” you are steered to identify yourself as a strong person and completely separate from the disorder in order to recover. People who have had an amputation are taught to accept what they have and are taught how to empower themselves and learn to adapt to their body.

It’s like doctors fear that if we embrace our condition we go off the deep end completely. I have been free of 99% of positive symptoms for three years somehow. But after dealing with this virtually my whole life I have thought processes that are unique. Even when you are grounded you know you’ve been somewhere different and you don’t forget how you’ve lived in a different world. We survived so why can’t we celebrate that? I have a great aptitude for abstract thinking and problem solving. People don’t follow me. It if I explain how I made the connections they get it and they can always appreciate the result. I still have so much troubl processing how to keep my house clean though. I start to think and I get disoriented. It’s just different.


#26

Meds took away so many abilities. I couldn’t create. I slept all day. My body couldn’t exercise. the things they took are things I need to treat this.

I lost all confidence as an artist during my treatment. Now I work as a designer and illustrator.


#27

Do you agree with this idea?

-you are miserable and hallucinating and so you agree to be medicated

  • you get a whole 15 minute med check every few months. In the time between appointments so much is happening that you aren’t able to really communicate it during the small window you have with the doc and they don’t have an accurate idea of anything

  • they want you to take more meds

  • the meds push things down deep in your head so you appear calm and safe. Yet you are actively working with the entities in your brain below the surface

  • this makes them think the meds are effective

  • then you’re just confused


#28

This is pretty much the philosophy back of ACT (see https://en.wikipedia.org/wiki/Acceptance_and_commitment_therapy and https://contextualscience.org/act), a mindfulness-based CBT that’s getting more and more popular lately.

It did wonders for me and several other people I know recovering from extreme anxiety, depression, borderlinism, bipolar, and PTSD. There are workbooks galore on ACT now. See https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=acceptance+commitment+therapy+workbook&safe=off&tbm=shop.

More and more mental health professionals are coming around to the view that there’s “embracing” and “mindfully accepting” vs. “learned helpless rolling over and playing dead.” The p-docs, however, are usually the last to know. And most of the therapists who were schooled before about 1995 (and too lazy to keep up with the New Wave) know very little about DBT, ACT, MBBT, MBSR and the mindfulness-based cognitive psychotherapies in general.


#29

Yes I agree.

There is far too little time for talking.

And yes, I believe meds cause dulling of the mind and emotions. However one can be miserable as you state. Given the choice I would be med free. Realistically to make other people feel better, I would choose to take them anyway.

Right now Im in the process of withdrawal from Invega Sustenna for health reasons.


#30

I used to think without observing my thinking from outside the box of that thinking. 99.99% of the population does that. It made me more and more disoriented, and it seems to do the same thing to a lot of people.

The average person believes that “consciousness” is “awareness” when in fact it is nothing but appraisal according to instructed (and “introjected,” see https://en.wikipedia.org/wiki/Introjection) usually common cultural, belief… which is not sensory observation. Psychologists Charles Tart and Arthur Deikman famously called what most of us live in the “consensus trance,” and authors like Jean Jacques Rousseau and Immanuel Kant were harping on the inadequacies of pure reason two centuries ago.

The real hard-core mental health pros in this contingent assert that we all become “disoriented” the moment we begin to think because we think in words that are mere representations of reality and not actual reality. The great “translators” of the “Eastern” philosophical traditions like Alan Watts, Stephen Levine, Pema Chodron, Chogyam Trungpa and Jiddu Krishnamurti – as well as Tart and Deikman – have been all over this for decades.

Whole psychotherapies are built on this point of view now, and they are very popular with HMOs, insurance funders and even the Veterans Health System now because they produce lasting results chop chop. I ran some of them down to you in my revious post.


#31

Wave i’m glad you did, i am 2 anti psychotics for years to combat the damage lamictal did to me after few 25 mg doses what ended me in the hospital escorted by 2 police officers


#32

It is getting close to my 22th anniversary of having neuroleptic malignant syndrome. I have never talked with anyone else who has experienced this and I wonder if the OP is still around. Back then I was diagnosed as “Depression NOS” or “Depression with psychotic features” or “pre-schizophrenic.” Doctors kept trying antipsychotics on me and I kept having those extrapyramidal side-effects of stiffness and horrible restless body sensations. On the morning my mother gave me my first dose of prolixin, everything changed. I knew within minutes that something was wrong. I had a strange disgust/sinking feeling in the pit of my stomach, and my body started to feel different. I told my parents something was wrong and that it had to do with the medicine, but they didn’t believe me. They decided we should take a car ride. Walking to the car, I was sweating and my head was pounding, my body felt stiff. As we drove, I could feel my muscles seizing up, while I had chills and was sweating profusely. I felt my thoughts becoming harder and harder to verbalize, and kept asking for help, saying there was something wrong, until it was very difficult to speak. My thoughts were not working properly in a very new way. It was if they were slowing down and getting further away.

When we returned home, my mother, who was frustrated by me acting like I couldn’t move normally and my “agitation” suggested I call a friend. She had to help me dial because my body wasn’t working right. While on the phone, I had a hallucination (not a normal occurrence for me) that my mother was outside and was hit by a car. I tried to tell the person on the other end of the phone, who was shocked for a moment but then realized that my strange voice and this hallucination were connected. He asked to speak with my mother to ask her to seek help for me. She didn’t. Within a few hours, my consciousness decreased and I fell into a catatonic state that lasted for about a week. During that time, I was not able to speak, move, or function independently. I also had a fever. My parents stopped giving me the drug after three doses but did not seek treatment, as they considered these new symptoms to be confirmation that I had schizophrenia. I remember the moment I “woke up” from this nightmare: I hallucinated a pilgrim coming from some invisible place into reality and I tried to speak to the pilgrim. The sound of my voice out loud startled me, and I became self-aware. I was kind of impressed that I had hallucinated so vividly, but then I realized it wasn’t good to hallucinate and that hallucinating was something a “crazy” person might do.

After this event, my body felt very stiff to me, and my thinking seemed much slower than it had been before. Later that year, routine blood work revealed alarming kidney and liver abnormalities that were not typical for someone my age–I have never been able to know if these were related to the NMS or not. I was not formally diagnosed with NMS because my parents did not seek treatment, so it’s possible that I didn’t actually have NMS. But my symptoms match the profile. The most traumatic aspect of NMS was not understanding what happened. For years I thought it was a reflection of me being weak and “messed up.”

Two years after my experience, I had general anesthesia to remove my wisdom teeth and had an adverse reaction to the anesthesia–weakness and short term memory loss for several days. I also had an adverse event to an antiviral medication that is also a neuroleptic. Later on, through a therapist, I learned about NMS as a likely explanation for that experience.

For the OP, know that since you have had NMS, it is important that you place a note that you had NMS in your medical file, as anesthesiologists must be careful with you.

In the end, it turned out that I don’t have a psychotic disorder; I had and have PTSD and dissociative identity disorder. I have sought treatment for these and am finally improving after all these years.

Also, for the OP or others, I would like to hear about what NMS was like to you. Did you experience delirium or loss of consciousness? When it was over did your body stay stiff for some time, and did your thinking seem slower?

Finally, for anyone suffering from similar effects, you might look into neurofeedback as a way to heal from this horrible experience.


#33

It’s hard to remember how long I was stiff for. I know that I was discharged with a neck brace from the rigidity. I was fully blacked out for about a week while I was inpatient. I woke up from it taking Clozaril which was its own nightmare. I took it for the next ten years and was a drug-induced zombie. The Clozaril caused significant impairment and my thinking was much more internalized. It also killed much of my memory. I have merely a handful of memories from 2008-2012 when I discontinued it.

I have significant muscle related problems but the cause has never been determined. I have definitely dealt with severe dystonia but there are other factors that don’t fit any established pattern.

I haven’t had anything detected in labs since the NMS. Nothing significant anyway. Antipsychotics can cause so many different things that it’s hard to know for sure what you had. I’ve had general anesthesia twice since NMS. Once was on Clozaril a year later and one was on Latuda about 13 years later. I didn’t have any major issues. I have trouble tolerating epinephrine. Like major trouble but that seems to be in line with some other neurological ■■■■ I deal with.

At this point I am confident the drugs I’ve been on and forced on have played a major role in some of the impairments that affect my functioning. I am pretty angry about it. I was out through so much and drugged so severely I had no ability to fight the horrors of their effects once I hit the Clozaril regimen. I’m only taking Lexapro and the occasional small dose of Ativan when it comes to psych meds. Coming to terms with everything is a process. The real problems I have with processing it all come up at times (like now) when managing the body and brain pain, and whatever else may be present, limit my basic functioning to where I’m crapped out in bed, isolated and bored and have little I can do to distract myself from the pain because I just need to shut it all off.

I am definitely a victim of pharma. Others played roles in how ■■■■ played out and looking back I don’t know what would have happened if I had gotten off things or what have you. I try to go about life and for the most part I do. I am in constant pain though. I’m also coming to terms with the fact that this won’t be figured out or fixed. I try to go about life but when the ■■■■ the drugs did kicks you down and you can’t do much for days or a week or two and you can’t really work for that time you feel helpless. I’m trying to find peace but the financial burden is taking a toll. I put a lot of energy into working how and when I can and resting the rest of the time. There has been little time to build in pleasurable activities and often the pain from anything but darkness and quiet is too much to take when I’m in a major kick.


#34

Hi.

You’ll be pleased to know Im also a past sufferer of NMS.

In December 2012 I started experiencing hallucinations and delusions for the second time in my life, after my first episode in August 2011. Some of these were mad and I still remember them to this day…I was eventually hospitalised on the 4th of February 2013 when I was in a real bad state. However this wasn’t the worst of it.
As they were changing me from Respiridone to other antipsychotics because my first one was not working for me anymore, I took a reaction to a new drug/s (I don’t remember what drug it was but it was either Quatiepine, Arapriprazole, or Olanzapine, my current drug is Amisulpride). From this stage I dont remember much, I was absolutely out my mind, I was hallucinating, delusional, suffering from some muscle problems, and having disorganised speech. But on top of this I started feeling feverish like. Im pretty sure although it was a blur that my temperature was rising fast, i was getting sweats, and my whole body was starting to get stiff, especially my legs. The only thing i remember my doctor saying is that my ‘CK’ levels were far too high, after researching this years after I now know this to be a symptom of NMS. After a few days I started to get really bad, I could hardly walk, was walking slower than a snail, my legs were so stiff, id find it hard to get up out of bed because they were so stiff, eventually my doctor ended up saying that my muscles were starting to deteriorate so urgent action was needed and I was taken off all tablets…this resulted in me being violently sick while shivering from coming out a cold shower, my hallucinations and delusions were still there. The worst part of it all is I actually remember being slightly unconscious, although my mum and dad say this never happened. I remember not being able to open my eyes and hearing voices around the room etc, I had a delusion that maggots started to feed on my eyeballs because I was left in the bed not moving for so long, I kept getting these messages and thoughts in my head saying ‘‘Larry your going to be ok you can pull through this, you can slip out of unconsciousness if you try’’. Im not sure if this was a delusion or not however my body was telling me i was in a state of non responsiveness. I also delusionally gave my self my own coma scale and I seemed to keep telling my self i was slipping in and out of different levels of consciousness, all backed up to the fact I was super dazed and confused a lot of the time and I’m pretty sure I also remember a nurse coming up to me with a flash light and opening my eyelids to see if i was still alive. This lasted a few weeks I’m sure although my memory from that time is bad so Im not sure of exact dates. Eventually it passed and I got better, however this gave rise to me starting to hear voices and I was still having delusions and hallucinations, which then lasted for another 3 or 4 months.

However a big point to make is that after all this happened (my NMS), while I was in hospital and being allowed out visits with my mum and dad to go for some short drives around the area, I noticed I started having a memory problem. Id remember leaving the hospital, getting in the car, and going away, however when I came back I wouldn’t remember how I got back from the journey and in my mind i kept telling my self it was a different road to the one that we left from, although it was the same. It was like a big gap in my memory, that would only happen when I left hospital (although it could have easily have happened in hospital but i dont recall this). Wether or not this was a complication or result of NMS is to be debatable how ever I highly suspect it was.
This memory malarky finally passed and I ended up getting out of hospital on the 2nd of July 2013. Ive not had positive symptoms since…heres hoping it never comes back!


#35

It’s a hard state to describe when you appear to be delusional and hallucinating but you’re actually fluctuating in and out of normal consciousness. The maggots you saw remind me of the pencils I saw. I was so stiff I couldn’t write without it become horridly jagged. I still have the excerpt I wrote on the back of the patient handbook. At the time I wrote a lot of dark poetry and sketched demons. It was therapeutic. I was sitting in the hospital and I didn’t have a pencil but I would see them on the couch or the floor and they would slowly move into the floor and I would try to pick them out of the carpet. I would be gripping them but since they weren’t real it did’t do much. I think I appeared much more aware than I was. It took a lot of time to be able to get these memories. I spent the next 10 years in a medicated coma state. It will be 5 years in February since I left that 10 year period and still things come up that I have to learn to respond to and process. I began taking large amounts of Haldol in late August of 2001. The 9/11 attacks happened while my symptoms were increasing and then shortly after I had NMS after a onset period. I was then drugged into oblivion. We just had lots of 9/11 coverage for the 15 year anniversary and it’s very hard to process something you are feeling after the fact. Seeing coverage of that shows so many things in life that were different then, just technology or clothing styles. Things that had swept over me or been deleted from my mind. Anything that you can imagine involving heavy mental and emotional processing didn’t happen or couldn’t register as more than apathy. I don’t know how much the NMS itself contributed but I am sure it is the reason for things I still deal with today. I think my muscle issues are far worse because of it. I never really recovered from that part. I also went from muscles so rigid I was discharged with a neck brace that stabilized my head to a drug that caused dystonia and severe stiffness to one that destroyed me when it came to dsytonic reactions. The NMS likely made it so what I took after had no real chance of not causing those side effects. I had already been highly susceptible to things so I was kinda out of luck after.


#36

I suffered horrific side effects from risperidone but when using Abilify it was like I had nms myself if you look at past posts of mine you’ll see what I said

I still have side effects to this day but it’s easing off slightly I now live in a mental health unit and I was hospitalised again in April Zoloft caused me agitation and worsened my groin blood flow

I’m no longer on meds and I’d only take remeron if forced or in a depressive situation the mental health in UK is all about meds my psychology was axed after one session at least I have a pdoc who listens now and knows my side effects

Having delusions and anxiety is one thing but to have genes of illness from meds is even harder it’s been hell for me it’s hell for all of us


#37

I haven’t had NMS, but I have had very bad responses to meds and I have seen NMS in a schizophrenic woman i was a caretaker for (before i got ill).

This woman was permanently institutionalised. They did a med change secretly, without consulting me and her daughter as they should have. Right after that, the woman got extremely sick. She had high fever, low consciousness, muscle rigidity, was falling all the time and had all sorts of other symptoms. The nurse told me she was diagnosed with NMS from the meds, had to be taken to hospital and they lowered her meds as far as possible. When me and the daughter of this woman asked for an urgent consultation with the doctor and complained about them changing the meds without consulting us (against the “rules”), they all of a sudden withdrew everything and said she had a bladder infection and it was definitely not from the meds. Bastards.

I have a great sensitivity to meds (also antibiotics, caffein, etc). I had an extremely bad response to benzodiazepines and antipsychotics after using ciprofloxacin. I believe there was some sort of interaction going on, as the cipro increases the serum level of AP and withdrawals from benzo’s. My consciousness was almost gone, I could hardly talk and couldn’t follow a conversation and was fainting all the time, I had problems walking and moving, a fever, trembling, jaw clenches, extreme anxiety. I refused all further meds. They didn’t believe me and just ignored it. Later I had a similar but somewhat less severe response (fainting, loss of consciousness) and they ignored it again and forced me to continue the meds.

Ever since I have been extremely scared of psychiatrists and meds. And I feel adverse effects like NMS might be severely underreported, because doctors don’t take their patients seriously when they happen and cover up their own mistakes.


#38

I had a severe case of NMs. I spent 71 days in the hospital. Now I’ve been out for several weeks and am still having trouble walking and my right arm and right leg are numb. It has by far been the hardest thing I’ve ever gone thru


#39

:frowning: that sounds awful. I was discharged with a neck brace from contorting so much. It’s been much harder to deal with medication in general afterwards and before was no picnic either. I remember being stiff and disoriented for a long time afterwards.

Were you prescribed anything to help? I took Cogentin before and after NMS and it has been a lifesaver but it has its own side effects which are not super pleasant - dry mouth, etc. Do you have access to a gym at all? There are aqua therapy classes that can help alleviate some of the strain.

I had dystonia from several meds before NMS and I’m prone to extrapyramidal symptoms and even now that I’m off all antipsychotics I have residual dystonia. I have had Botox injections which have helped but need to be repeated every few months.


#40

I was prescribed medicine for ptsd and bromocriptine for a month upon discharge. I was also discharged with a neck brace