Has anyone experienced akathisia?

YES! Torture is a good word for it. I also get the thing where your neck arches back and hour eyes roll back. Can't think of the name. ,(it isn't demon possesion&#128521

Probably dystonia with the neck that arches back. Do not know about the eyes.

Not fun at all.

Yes, I have. Once when hospitalized, I was put back on Seroquel. I had been on Seroquel many times over the years and never had a problem. That time, I had it horribly in my hands/lower arms and legs. Especially my hands. They allowed my sister to bring fidget toys in for me, and that helped a lot. I still had akathsia when I got home, and it was still pretty bad. I used fidget toys nearly all day most days, but as the 1 month mark approached, the akathsia started to lessen and then went away completely. It was the strangest thing.

I do still have a bit of akathsia in my tongue and with lip twitches (not too noticeable or bothersome for me), but that I have always had on Seroquel, and it stops any time I stop Seroquel. That akathsia is minor and liveable. The other, how I lasted a month, I will never know!

Yup. Torture is the right word. Docs did a thing where they put me on haldol deconoate shots every three weeks AND had me take the pills, and I swear I walked 500 miles a week for like two years. Had a fitness watch at one point that logged in 40,000+ steps in a day regularly. Horrible. 2am I'd be out in snowstorms because I'd just be laying in bed twitching like "this is not fun, I need to go move around."

I just realized I already posted to this thread but it wasn't marked as replied. But my NP has a theory that now that she knows I have (really severe combined type) ADHD that (with the lowered dopamine theory) along with prior doctors practically abusing me with antipsychotics might be why I'm more prone to it than a lot of people. I find that my new ADHD meds keep me a lot more still (she does too). I know that is it treating the hyperactivity, but I wonder if it can treat akathisia by raising dopamine too (which low dopamine is the cause of movement disorders)

Akathesia is an uncomfortable aggravation, for sure. However, I can think of two conditions that make it seem pleasant. One is the charlie horse which is when your thigh muscles tighten beyond your control and any movement or attempt to relax them only makes it worse. Much worse. Niacin flushing is another extremely uncomfortable sensation. High doses of Niacin can treat high cholesterol, but your body must gradually adjust to the high doses. If you miss a dose and resume without incrementing, or exceed your tolerance, you may experience flushing, which is a mad itching that occurs all over your body. It will induce a panic and make you want to jump out of a window.

I think I would take Charlie horse/ muscle spasm over akathisia honestly just because akathisia can last days, weeks, months… years… a spasm you’re not dealing with that pain more than half an hour tops usually like five or ten minutes for me (as someone who’s struggled with alcoholism and bulimia in the past am well familiar with that pain). It might come back but if it does you know you really need Gatorade or something. I would rather have a short lived really intense physical pain than a long lasting combo of physical and mental agony that keeps me from sleeping for months.

I’ve heard of people trying to cheat a drug test by ODing on niacin and getting extremely ill. Itching is one of the memories keeping me from relapsing on opiates (side effect I got really badly and looking back I don’t know how it was worth it), so no thank you.

I am not familiar with niacin but well familiar with Charlie horse. Since childhood. My grandmother had them, too.

Like Muddy Boots, I will happily take Charlie horse over akathisia anytime. For me they are not in the same league.

Yes its dystonia! So painful and scary.

I had a reaction to Thorazine during driving in traffic. Dystonia in elbows and knees. Hard to describe. Not pain but extremely uncomfortable tension. And I could not exit the street in traffic to park and take Lyft home until I recovered - there was no way and I had to keep driving. So scary. My pdoc's pupils widened when he heard the story two days later.

If I ever take Thorazine for crisis intervention, I will not drive for several days afterwards. And I will never take it for maintenance. Too scary and experience it was. Just thinking of what could have happened makes me nauseous.

I'm glad you got through that without harm. Those are good resolutions.

Thorazine is real old and it can cause tardive dyskinisia, if you stay on it for years. I'm afraid of antipsychotics.

Yes, it is the very first synthesized psychiatric medicine.

Thank you, Rose, for supporting my resolutions.

God, it's the worst. Had it in April from Seroquel and damn Dr didn't believe me. And had it in 1993 in hospital from f-ing haldol. It lasts all night and is absolute torture.

In 2009 I had akathieia all night long, each night, on high doses of Seroquel, too. Horror.

I think you might be referring to "oculogyric dystonia." This syndrome was depicted in the movie "Awakenings" with Robert DeNiro and Robbin Williams. It strikes me as hellishly awful for the person experiencing it. I truly wonder: is any therapeutic effect worth going through that?

A relative of mine was on antipsychotics most of his adult life. Late in life he was diagnosed as having Parkinson's Disease. Years of being on antipsychotics can cause a condition that presents much like Parkinson's disease. Doctors have claimed that they can distinguish Parkinson's caused by drugs from Parkinson's not caused by drugs. I have serious doubts about that. I wonder if my relative may have developed the disorder due to all the drugs he was given.

I'm very sceptical that the benefits of antipsychotics outweigh the risks. Perhaps, for some individuals, they do. However, everyone with a diagnosis of depression will eventually be given antipsychotics, if they don't improve a lot on antidepressives. They were given to me - several different ones. Useless for my depression, but Seroquel did help me fall asleep at night. Now I take cannabis gummies to get to sleep, and they work great. The only downside I've noticed is waking up with a dry mouth.

I've experienced skin flushing which can be so intense that uncomfortable isn't the word for it. I was taking Niacin to control cholesterol and you must be careful to ramp slowly up, then maintain a therapeutic dose without missing any doses.
If you do you have to drop the dosage back down or you invite skin flushing. Flushing is a crazy intense itching that occurs everywhere and cannot be satisfied. It only lasts for a minute or two, but it seems like an eternity. Also, the Niacin
can give you gout, which is when you exceed your body's ability to dissolve it and it accumulates in your joints as a crystalline substance and that's painful. I finally gave up on the Niacin and went with a Statin.

Rose,.
Please look up xylitol mints on Amazon. They reduce the risk of dental caries and prompt the mouth to produce healthy saliva. I also find them yummy and my favorite flavor of all is lemon. It is a cheap way to kill two birds - reduce dry mouth that gummies give you and improve your oral health. I am so glad gummies work for you and have replaced Seroquel in your toolkit.