My Journey on Ingrezza

I had my Ingrezza upped to 80mg, and I have had a pretty bad cold lately. I decided to take NyQuil last night after reading the back and the drug interactions and such. About 30-45 minutes later, my muscles completely tensed up, I couldn't move or speak. When my husband moved my legs I shook. I could think somewhat but I couldn't form words or move my jaw. I could mumble. He called the pharmacy that handles my Ingrezza and they didn't know what to do because they hadn't heard of that side effect before, and because I have had serotonin syndrome and seizures before my husband decided he wanted to take me to the ER to be safe. He had to dress me but by the time we got there I was able to talk and walk with assistance. The doctor also didn't really know what to do other then give me fluids and keep me there until I felt ok. I eventually felt better, just extremely tired and they discharged me. My husband is pharmaceutical major and he looked up the compounds and the side effects of both the cold medicine and Ingrezza and they seem to interact. I submitted the complication to the FDA so hopefully they figure it out so it doesn't happen to another person, but it was scary. I am now afraid to take any over the counter medications.  

Started 80mg to help with my lasting grimace and twitch. Hoping to see if they go away

I started Ingrezza around a month and a half ago and it has done miracles. I am barely twitching unless under extreme stress. I am no longer stopping breathing due to twitching both while awake and asleep. This is the best drug I have ever been on, the side effect I dealt with at the beginning was a racing heart but it has calmed down unless I drink a lot of caffeine. Also just like all my other medications I have to stay very hydrated (but that could just be related to my other medications.) I just wanted to share this with all of you, anybody who has TD I would 100% recommend this drug, the only downside is of course the cost which is around 6,000 a month, but I have a copay card so I pay nothing which helps a lot because I am on a lot of other medications. Hopefully this can help anybody with TD!

When you wait to long to take the medication, at least for me it causes extreme itchiness. Weird but that is what I have found 

I am twitching pretty bad today, my eye can’t stop, no neck twitching but my and face won’t stop

Current low stress twitch

My current constant grimace

Eye/neck twitch seems to be getting better as its happening less often even in moderate stressful situations (still happening in highly stressful situations), my breathing has also been a lot better in all situations though my mouth grimace seems to be much more apparent and constant, but that could be because the more obvious twitching (ex. eye/neck) has calmed down.

Sleepiness is extremely bad, I am exhausted all the time. It's so hard to get out of bed.

I am swallowing 173.88 dollars every night with my Ingrezza alone.

I slept like a rock last night. I never sleep like that, I slept for 12 hours.

Pantherx is still dealing with Ingrezza to get me a copay card to pay for the difference of what my insurance won’t cover. Hopefully I should be starting soon, I am nervous, but excited. I really hope it can help with my tic. 

Pantherx speciality pharmacy is stilling working the process to get me the copay card so I won't have to pay the $40 copay. They said it should be completed within a couple of days.

When I sleep I have a second tic, it causes me to stop breathing and twitch my head.

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