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Has anyone else had Neuroleptic Malignant Syndrome?


#1

I had NMS in 2001 and haven’t met anyone else who has. It would be interesting to compare notes. I have had trouble finding any information about long term effects. I usually hit a roadblock at “so rare we don’t have enough research to say. Wait and see”


#2

What were your symptoms? I got a bad reaction of Zyprexa. Don’t know if it was that.


#3

It’s a pretty severe reaction. I was hospitalized for 14 days and full amnesia for about 7. It includes muscle rigidity, fever, raises blood pressure and CPK levels. Crazy hallucinations and the muscle stuff was so severe my handwriting was like chicken scratch. I had to use my left hand to steady my right wrist to hold a pencil. Couldn’t feed myself. It can be fatal. It’s very very rare now because dosing is more controlled, so I am having a very hard finding others who have had it.


#4

i had it from lamictal 25 mg, still having psychosis (tardive) from it


#5

Just to help the discussion along:

Neuroleptic malignant syndrome (NMS) is a rare, but life-threatening, idiosyncratic reaction to neuroleptic medications that is characterized by fever, muscular rigidity, altered mental status, and autonomic dysfunction. NMS often occurs shortly after the initiation of neuroleptic treatment, or after dose increases.

Signs and symptoms
The key to diagnosis is that NMS occurs only after exposure to an neuroleptic drug. On average, onset is 4-14 days after the start of therapy; 90% of cases occur within 10 days. However, NMS can occur years into therapy. Once the syndrome starts, it usually evolves over 24-72 hours.

Cardinal features are as follows:

Severe muscular rigidity
Hyperthermia (temperature >38°C)
Autonomic instability
Changes in the level of consciousness
A summary of the clinical features of neuroleptic malignant syndrome includes the following:

Muscular rigidity (typically, “lead pipe” rigidity)
Hyperthermia (temperature >38°C)
Diaphoresis (unusually heavy perspiration)
Pallor
Dysphagia (unusual difficulty or discomfort in swallowing)
Dyspnea (difficult or labored breathing)
Tremor
Incontinence
Shuffling gait
Psychomotor agitation
Delirium progressing to lethargy, stupor, coma


#6

God - Did not know that Lamictal can cause Neuroleptic Malignant Syndrome!

Just got off of Lamictal weeks ago - glad I did!


#7

Any anti-siezure med has the potential, but it’s extremely rare. Sad that @nodrugs has the genetics, it appears. Ratty stuff.


#8

Yeah I have come to a point where I am unable to take meds. Fortunately I am in a place where I’m better off them. I react severely to many things. Had the rash on Lamictal even.

I’m working with some great doctors who are looking into a neurological condition that would explain a lot of things. So maybe meds on top of that sent me over the top. I don’t know if it’s possible to know if it is directly related but my mom was put on haldol while I was in utero. It was for a fairly brief period but in the first month. It’s coincidental at least that Haldol caused my NMS


#9

It’s a possibility. I’m not sure what sort of downline metabolites might have made it through the placental barrier.


#10

Ok. I’ve had something similar on Zyprexa. But not all symptoms. I got nausea, vomiting, dizziness, shaky, low blood pressure, high heart rate, anxiety from hell. I had to stop taking it. Pdoc put me on 20 mg over night. Prop too high dose for me.


#11

The only thing I’ve come across that would apply would be CNS damage. I’m being treated for some yet to be determined CNS things. I don’t think it would have caused everything I’ve dealt with but I don’t think it helped. There’s not much I can do now, obviously, but it’s been a long journey of physical symptoms as well. Right now I’m interested in ruling things out. It sucks that so much psychosis up and left and now my body is ravaged. But it is what it is. I’m still doing stuff, it would just be nicer to be able to predict the level at which I can function from day to day.


#12

Isn’t that the truth. I have been forced to do a ton of mindfulness work via a good half dozen MBCTs like DBT, ACT, MBSR, MBBT, etc. to get whatever handle on that I’ve got thus far… and the handle gets bigger and easier to get a hold of as time goes on. Things will be the way they are on this roller coaster Alanis taught us years ago.


#13

Hi
Im one of those that get insane side effects. Doesnt matter what drug, its hell. I know how you feel. NMS sounds horrible.


#14

Found out from son’s pdoc at ER that my experience was a rare side effect. That’s why the want to monitor him at the hospital when he starts Zyprexa. If he gets the same side effect.


#15

I have learned self-talk skills that I am confident can get me through anything. Three years ago I was getting full blown Dystonic reactions from Latuda. I’d been on it just a few months and my doc left the practice withing a week of being discharged. I took it as directed and about once a week I was in the ER. Ten times that summer. I had a CRNP who was zero help and a therapist I ended up reporting for misconduct who tried to convince me it wasn’t that bad. I’d spit up blood from the pressure of my jaw clenching and one time a tooth snapped. About four times I would be in my kitchen alone and know at that point I had to get to the ER but of course couldn’t drive like that. I had to call a cab even when I could barely talk and wait for them. It was the worst pain I’ve ever felt. I’d get there and the nurses would roll their eyes and the doctors would talk down to me and sometimes make fun of me then tell me to get it together and stop taking the drug and just try another. Yet I had been on 9 others and none worked and I still had dystonia and no doc was working to help with that. I found that I had to take Latuda and go to bed Righ away and I was ok. But that meant eating a full meal right before bed since it needs at least 350 calories for absorption. I did that until I had reactions when I couldn’t sleep. So I spent 5 months discontinuing. Finally got to 0 when my new doc was on maternity leave. Bitched and pulled strings to get them to put me with the one guy I trusted. Withdrawal was excruciating and of course no help with that. Apparently it’s “pharmacologically impossible” to have withdrawal symptoms, must be anxiety answers. Now I’m on nothing. It’s agreed on by all that it’s unsafe and I’m stable. I’m traveling 4 hours each way every other month to see docs at a large hospital system who are helping see if I’ve got damage from the drugs and are looking into additional factors. To the outside world I appear very together and successful and smart. Yet I’m ravaged inside and I feel like keeping up my reputation so I can hopefully ease out of the brain turmoil is the best way to go. Yet often I feel like I go on just because others want me to. And my cats. I know they need me more than anything. So I keep going. But I’d like a break. I’m 32. This ■■■■ started when I was 8.


#16

Oh, gawd. But I can relate. 1994 to 2003 was plain wretched until I encountered a southern Asian med schooled female who saw me in my 14th or 15th lock up. She said, “Oh. This is PTSD (along with all the other stuff),” put me on Seroquel, and sent me off a few days later. It was the first med I ever took that did anything that was actually useful and didn’t produce horrendous sfx (for me). The rest of the story (including the two wake–up-in-the-ICU suicide attempts) isn’t worth telling here.

But, as you seemed to suggest when you wrote “I have learned self-talk skills that I am confident can get me through anything,” I had to do that rather than just depend on the meds. Now I’m down to a fractional dose… and really just to keep the doc happy.

Can I ask what was going on or if some particular “event” occurred when you were eight years old? (Most of us on this forum are 14 or 15 or 16 when things start to go floridly haywire.) If you’d rather not discuss it, I understand.


#17

I started getting very depressed. Something always felt off. As a newborn my grandfather said it was almost scary how alert I was for a baby. My family lived out of the country when I was in second grade and the adjustment back to the U.S. was a little rough. I also had a few strange infections abroad. We were in Europe and the language barrier was a problem with the doctors. It seemed like tha main cause of things was being 7 and in a school with a bunch of kids and their germs. I hadn’t built up immunities to the things they had so I was more susceptible I guess. When I was 9 I got my period and around that time I began to show symptoms of psychosis. Full hallucinations weren’t present until 13 or 14 but strange and disturbing thoughts and actions.

I am working on being tested for autoimmune encephalitis which would fit every symptom I have had. It can cause psychosis in addition to everything else. It’s common to have symptoms as a kid. Much more so that with schizophrenia. Its my understanding that untreated it can lead to schizophrenia. I definitely have something going on neurologically. If that’s always been there it would help explain why drugs make me go nuts. I’m sensitive to everything. Antibiotics, caffeine. They say my nervous system is on high alert.


#18

High sensitivity to stimulation is powerfully correlated to sz and bipolar.

Mental and physiological stressors.

You are the fourth sz pt I have encountered with this combo.

Very strongly suggested as a possible means to get more empowerment and capacity to manage the upshots:

When I combined the knowledge I got on the hypothamamic-pituitary-adrenal axis from those & other sources with the mindfulness skills I picked up from authors like Linehan, Kabat-Zinn, Chodron, Levine, Trungpa, Tart, Goleman, Deikman, Krishnamurti and others, I was able to intervene far more effectively on my OCPD reactivity to my own hyper-sensitivity.

I found the following article first, read it, saw a piece of The Grail, then got the books listed above.

http://www.nature.com/npp/journal/v22/n2/full/1395453a.html


#19

Yep. My mom is bipolar and had postpartum psychosis just after I was born.

Autoimmune disorders tend to cluster. I have celiac disease and unspecified hypothyroidism. Little bro and dad are type 1 diabetic and bro has hashimoto’s.

I feel like I have been failed by the mental health system in many ways. 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. There are things I experienced that I could not have if I hadn’t been through such deep psychosis. I can apply a problem solving skill set derived from a different plane of the universe to a broad audience of people who could have never made such connections. This needs to be embraced. If we have this condition and it isn’t going away, we should be allowed to see how it can be positive. I think if we are afforded that we’d have less need for meds. Even just a lower dose can help.


#20

No argument there. Waaaaaaaaay to focused on meds.

The industry-accepted rule of thumb for long-term triage:

"One third of severely debilitated mental health pts have enough resilience we can work with (e.g. with CBT, DBT or some other MBCT) to be likely to have a good prognosis on ever lower med doses.

"One third of SDMHPs have moderate resilience but also a lot of physiological and/or psychological co-morbidity that will make it only somewhat possible for them to get any ‘better.’

“And one third of SDMHPs have little or no evident resilience owning to physiological and/or psychological co-morbidity that is often plain overwhelming to the extent that they will suffer no matter what we try to do, so just give up, case-manage and otherwise triage them out.”

I was deemed not to be in the first two categories when I was consigned to a tax-supported holding tank in 2002. Eight weeks there freaked me out enough to do what I could to find a better way. With the help of an effective LCSW in the Veterans Health System, as well as friends with sufficient legal skills to get me on temporary disability (it cost me a few hundred dollars, but so what?), I got the train back on the track.

I had heard a story told by a friend who’d been a club boxer in Chicago: “I knew by round two or three if I was going to win or lose. If it looked like the latter, I just hung in there and kept on punching. Once in a while, the other guy folded.” I didn’t get that story at first. But I did later on.