booboo Posted March 14, 2014 Share Posted March 14, 2014 Hi, I just joined these boards, mostly to toss a big old warning to people just starting Latuda. I have suffered from depression for years, the most recent episode since around 2008. Prior to that I have had trichotillomania which went into remission but came back in 2011. In 2006 I was diagnosed with POTS, postural orthostatic tachycardia syndrome, a type of autonomic nervous system disorder. Around that time also I began to have severe panic attacks but wasn't given Ativan until I ended up in the ER one night with sinus tachycardia at 180bpm sitting. In the past three years I have been on a massive manic spending spree, racking up big time debt, working 70 hours a week, and in 2008 I finished a second master's degree while working full time. A week ago I was diagnosed with bipolar disorder. (Not sure if he's put me in I or II, I'm assuming I.) Also obviously anxiety disorder. I cut my Lexapro from 20mg to 15 to 10 starting in mid-Feb. Current meds are: Lexapro 10mg Lyrica 75mg morn and evening Metformin 1000mg morn and evening meals Metoprolol 50mg morn Tramadol 50-100mg as needed, usually 2-3 per day Ativan as needed - .5mg Vitamin D 50,000IU twice weekly Fish oil, B-vitamins etc etc Psych added: Lamictal -1 tab morning for 7 days, going to 2 tabs for 7, 3 tabs for 7, reaching 4 tabs per day Latuda - 20mg with evening meal for 7 days (sample pack) Lamictal was fine....No telltale rash. Latuda -- Oh. My. God. First two nights on Latuda were unreal. I took it and within 30 minutes I could feel myself changing with waves. Within two hours I was knocked out cold. Third day on Latuda I was out of it, but managed to get a few loads of laundry done. I still had lots left on my to-do list but wrote it off as an "adjustment" day. That evening while reading and browsing the web I noticed my hands, legs, and abs were twitching pretty hard. Day four I felt like my head was on backwards. My whole being felt flip-flopped. I went to my acupuncturist for my regular pain therapy, and the needles hurt. (they never even feel like anything). One even was for all intents and purposes "bounced out" of my shoulder my muscle was so tight. I screamed in pain. Monday night I could not sleep. I sat in a catatonic trance on my couch until 3:30am and pulled almost 1/4 of my hair out. Day five was the beginning of hell. I craved salt. I killed two big bags of potato chips. My throat hurt. I thought I was getting a cold. (It is cold and flu season.) I cancelled my morning therapy. I was tired and agitated but couldn't sleep. My muscles were still twitching. I read the side effect sheet, and although it said to watch out for stiff muscles or twitching, it also said to look out for fever. I took my temperature and it was only 98.2. Even though I run cold, I know that fever is absolute so I just sloughed it off saying I would talk to my doctor later in the week. BIG MISTAKE. I sat spaced out on the couch again for all of day five determined to find a dog on the internet to adopt. Also still yanking my hair out. No sleep again that night. Day six sucked, but my lack of sleep now turned into some kind of zombie horror movie euphoria. More hair pulling, binge eating alternating with nausea and fasting for long periods. I had an acupuncture appointment at 3pm that I managed to pull myself together for, and she was shocked at how hot and dry my skin was. She also said that the needles were going through very stiff muscles. She encouraged me to hydrate. BEST ADVICE EVER. She treated my yin points and I left feeling grounded and cool. However my car broke down on the way home and by 6pm I had a core meltdown. When I got home I was in full-on rage to my husband, my heart was hammering hard, and I was ready to take a sledgehammer to the entire house. I caught myself and downed an Ativan as fast as I could. My throat was swelling even worse and pills were hard to take. The Ativan took the edge off, and after watching TV I was exhausted and collapsed into bed around 8:30pm and didn't wake up until 7 the next morning. I dragged myself into therapy the next day and was shaking frantically trying to get ready. I could barely swallow pills from swelling and pain in my throat and I was incredibly anxious. I stopped into my doctor's office but he was unavailable and I put off until Friday seeing him. Thursday night again no sleep, but when I did wake finally on Friday morning, I thought I was dying. I was drenched in sweat, felt like I had a belt squeezing my head and pinching my brain, my muscles hurt. I knew at this point without a doubt it was the Latuda. I talked to doc and he said to discontinue immediately, and to hydrate like hell. I went back to my patient leaflet and did some more research on Neuro Malignant Syndrome. I hope to God my twitching stops and that I haven't damaged my kidneys. Guys, this shit is seriously scary stuff. Don't do what I did and put off stopping it thinking "Oh I have to feel worse before I feel better." This is dangerous dangerous medication if it is not right for you. STOP IMMEDIATELY if you feel yourself changing or having a racing heart of are thirsty or sweat too much or don't sweat at all, or get headaches or get angry easy or start crying at the drop of a hat. STOP STOP STOP STOP. Link to comment Share on other sites More sharing options...
hagar Posted March 14, 2014 Share Posted March 14, 2014 Wow, that sounds like a seriously hellish experience. I'm so sorry and I hope you recover fully SOON. But every antipsychotic carries the risk of NMS, unfortunately. It's one of the risks we must take :/. Link to comment Share on other sites More sharing options...
booboo Posted March 14, 2014 Author Share Posted March 14, 2014 Also just to add -- I thought I had a cold. Don't mistake anything changing in your body for anything else. Pay attention!@!! Link to comment Share on other sites More sharing options...
booboo Posted March 14, 2014 Author Share Posted March 14, 2014 Wow, that sounds like a seriously hellish experience. I'm so sorry and I hope you recover fully SOON. But every antipsychotic carries the risk of NMS, unfortunately. It's one of the risks we must take :/. Thanks....the anxiety and mania weren't as bad as my "natural" anxiety and mania...but it's just shocking how something which is supposed to calm and lift ended up agitating and putting my body into high alert. Already would be time for my next pill and I'm feeling things "clear out" just at the next missed dose time, so I hope this is it. Now for the twitching to stop... I appreciate the chance to vent but mostly want to sound the alarm for others. I know we are all so eager to get better and will put up with some very unpleasant things to cross a bridge into a better tomorrow, but please please please listen to your body and your intuition and know that it's ok to say NO WAY Link to comment Share on other sites More sharing options...
humanoid Posted March 14, 2014 Share Posted March 14, 2014 Thanks for sharing your story, I'm really sorry you had to go through that and I hope you are getting back to normal and feeling better now! I took Latuda for a while and while it did nothing for me symptom-wise, it made me overheat easily and I was drenched in sweat constantly. Your story sort of sounds like what Geodon did to me in some ways, and that was literal hell! Link to comment Share on other sites More sharing options...
AnnaBanana Posted March 14, 2014 Share Posted March 14, 2014 I'm sorry you went through that. All meds carry side effects risks. I'm on Latuda, I've been on it for almost 4 years now and it has been my wonder drug. Sorry it did not work for you. Link to comment Share on other sites More sharing options...
Music Posted March 14, 2014 Share Posted March 14, 2014 I'm sorry you had to go through that, as a few people have already said most meds carry an inherent risk of serious side effects and while they are unlikely they do happen to some people. I took Latuda and I had no side effects from it. Again I'm sorry you had to go through that, I hope it doesn't put you off getting medication to help you with your condition. Link to comment Share on other sites More sharing options...
kateislate Posted March 15, 2014 Share Posted March 15, 2014 That sounds horrible. Antipsychotics have some potentially very serious side effects - you got one of the most dangerous - but I think everyone who takes one should at least read the insert to know what to look for. Just like people taking lamictal should know about the rash. I take Latuda and it's turned my life around - it's been a year now. I do have a few side effects, but nothing bothersome. I'm really grateful it's been such smooth sailing for me, because without it I don't do very well. Link to comment Share on other sites More sharing options...
Paranoidling Posted March 15, 2014 Share Posted March 15, 2014 (edited) - Edited May 1, 2022 by Paranoidling Link to comment Share on other sites More sharing options...
lisa2712 Posted March 16, 2014 Share Posted March 16, 2014 (edited) I'm on Seroquel XR 100 mg (which isn't a large dose), and I also have hot skin on this med, and headaches with discomfort in my temples. It isn't really bothersome, but sometimes I wonder if it's healthy for my body and my heart. When I started it I noticed my face was always red, like it raised my blood pressure, and I think this is a side effect. I also feel like my muscles are tighter on this med, but my psych NP thinks that's b/c I hold tension in my shoulders and neck. My side effects were worse on the 150 mg, and I only took it for 7 days before going back down to 100 mg. I also feel sad, like crying a lot on this med, but I get the same effect on antidepressants like Prozac and Zoloft. They help depression, yet they also make me feel sad. Apparently I'm sensitive to meds, and there are some drugs I can't take at all (even on the lowest doses) because of their side effects, including Buspar. Edited March 16, 2014 by lisa2712 Link to comment Share on other sites More sharing options...
aponder86 Posted July 30, 2014 Share Posted July 30, 2014 I have been taking latuda for 5 days now I noticed neck stiffness yesterday and today it is so bad I can not turn my head in any direction I am going to the hosp for whatever good that may do if you notice stiffness stop taking this right away I have been on tons of other meds and never felt this I know they work differently for everyone but if something doesn't feel right don't wait!! Link to comment Share on other sites More sharing options...
Aurochs Posted July 30, 2014 Share Posted July 30, 2014 Muscle stiffness is one form of EPS, and it does frequently manifest in the neck. It can be mild and transient, going away after several days or weeks on the drug, or it can be severe. If severe, you should call your pdoc for instructions. I'm not sure what the ER will or can do for you other than make you wait in triage and tell you to discontinue the medication. Link to comment Share on other sites More sharing options...
robotxd Posted August 6, 2014 Share Posted August 6, 2014 I am incredibly sorry for you. I have had bad EPS, but nothing THAT dangerous or daunting. I personally had a great experience with Latuda. Link to comment Share on other sites More sharing options...
Evey Posted August 9, 2014 Share Posted August 9, 2014 Latuda does the opposite for me. I don't get sleepy/sedated. I get over active, restless, hypomania symptoms. Link to comment Share on other sites More sharing options...
Equivilency Posted August 25, 2014 Share Posted August 25, 2014 That sounds awful. Haldol and Zyprexa really mess me up. Everyones different. Latuda is the most tolerable AP i've ever had. Link to comment Share on other sites More sharing options...
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