“Akathisia is a common adverse effect of treatment with antipsychotic drugs, with incidence rates ranging from 5-50% depending on the duration of treatment and the drug used. It is a common cause of treatment non-adherence and has been associated with violence and suicide.”
This blog post is directed at anyone who is suffering from akathisia, and their physician and family members and friends.
I suffered from akathisia after I stopped taking SSRI’s suddenly after 11 years when my depression went away with diet. My akathisia didn’t have the inability to stop moving. However it had symptoms like an overwhelming sense of impending doom, the feeling like I was falling, visual hallucinations, crawling sensations along my body, nerve pain, and touch and light and sound sensitivity. Sounds and lights hurt. It was the worst experience I’ve ever had and it lasted for 2.5 years. It only stopped with the plant free ketogenic diet I’m on, as well as strictly avoiding any medications that trigger it. It was the worst thing I’d experienced until I watched my dad with full blown akathisia.
My dad suffered from akathisia for almost 3 years and he almost died because of it. When he treated his depression with a strict paleo diet in 2016 he stopped taking an SSRI he had been on for over 12 years. He had severe withdrawal similar to me with akathisia-like symptoms and going back on the SSRI didn’t get rid of the symptoms. It was debilitating. He had an impending feeling of doom, a feeling of falling, panic, low blood pressure, sensitivity to sound and light and touch. He couldn’t sleep or work. Dad’s physician put him on clonazepam, a long acting benzodiazepine to treat his panic and insomnia which were actually SSRI withdrawal symptoms. That masked the symptoms but made everything significantly worse in the end. Clonazepam after SSRI withdrawal nearly killed him. After 3 years on the benzodiazepine, which he took as prescribed, he tried to come off of it and he experienced much worse akathisia than he had experienced from the SSRI withdrawal. We didn’t know what it was at the time. He was misdiagnosed multiple times. He suffered with full blown suicidal akathisia for almost 3 years daily after that. It was horrifying to see. It was the worst experience of my life, and obviously his. It took us a long time to figure out what was happening to him, and even longer to figure out a cure. Nobody helped us, because nobody knew what to do and nothing seemed to help. We thought he was going to die.
We went to private rehab facilities in the US – do NOT do this with a person experiencing akathisia – the rehab facilities won’t know what to do at all. They made him worse and put him on more medications, aggravating the condition. We went to Canadian doctors and they couldn’t help him and he was misdiagnosed with schizophrenia and bipolar and agitated depression. We finally went to Serbia and Russia to private clinics to find help. They tried everything there. They were more helpful than North American physicians but they also didn’t know what to do to alleviate all of his symptoms.
We had access to the top doctors in the world and we couldn’t find help anywhere on earth. Seriously. He almost died even though we had access to private hospitals anywhere. We tried every psych med out there to help with his symptoms and all of them (except one) made the akathisia worse. The akathisia side effect almost destroyed our family and killed my dad in a torturous way.
It ruined our lives for years. The best way to describe akathisia is to call it acute and chronic pain, but worse.
There’s a way out though and the following is a description of what worked for my dad and I. If we had known about the triggers for akathisia and the medications that helped, he might have avoided years of suffering, as would I have. Almost every medication triggered akathisia and only two helped. Plus a very strict plant free ketogenic diet was necessary to keep it under control. The medications didn’t do enough without the diet. We needed everything. I hope this can be used as a resource for people.
What Is Akathisia?
Akathisia is a common side effect of psychiatric (neuroleptic) medications, as well as some other medications including antibiotics, as well as dose increases or sudden decreases of said medication.
If you look up akathisia, you might see a definition like “akathisia is a feeling of inner restlessness”. This is putting it more than lightly. Akathisia is one of the, if not the most severe side effect a human can experience, and frequently leads to suicide.
If you speak to a doctor about akathisia, they most likely won’t know what you’re talking about, which makes it all the more dangerous. A lot of doctors will also underplay how bad it feels by suggestion that the anxiety felt by the patient is due to the inability to not stop moving. In our experience this isn’t the case. The overwhelming sense of doom and panic is a completely separate and fairly physical symptom that accompanies the inability to stop moving.
You need to find a specialist, or use this resource. Don’t just go to anyone and definitely don’t assume rehab or a hospital will help.
- Acute akathisia develops soon after you start taking the drug, and it lasts for less than six months.
- Tardive akathisia develops months or years after you take the drug.
- Chronic akathisia lasts for more than six months.
- Withdrawal akathisia occurs when stopping a drug.
I believe that most people who experience chronic akathisia are still on a medication or eating a food that is causing it, and should try to change their diet to zero carb and remove any remaining medications. People experiencing akathisia have damaged nervous systems and possibly damaged nerve sheaths and the akathisia can be triggered easily by anything the body doesn’t like. It can also be caused by what you eat.
My dad had chronic akathisia and it only went away when we did the following treatment, strictly, and he maintained his diet of only eating ruminant meat. He has severe allergies to other foods as well as animals, environmental allergies, and allergies to medications. The akathisia still comes back if he eats anything off of the all meat diet or takes any medication that impacts his dopamine, serotonin, norepinephrine, or histamine receptors. It’s difficult to navigate but completely in remission now, and once you get the hang of the diet it’s not a big deal. Not as big of a deal as akathisia.
What Does Akathisia Look Like?
- It can look like someone who can’t stop moving, or can’t stay seated.
- It can look like repetitive movements or stomping or scratching.
- It can look like someone is complaining more than they should be or trying to get attention.
- It can look like drug seeking behaviour.
- It can sound like the person is going to hurt themselves or people around them out of desperation.
- Symptoms can be worse in the morning, or evening, or bad throughout the day.
- It can look like yelling at people and extreme irritability.
- It can look like hitting walls.
- It can look like erratic and scary behavior.
- Video example of severe akathisia with suicidality.
- Video example of severe akathisia.
Akathisia is very poorly understood and usually misdiagnosed as schizophrenia or bipolar or agitated depression. Do not underplay how serious this condition is. Get the person complaining of these symptoms help and relief as fast as possible. It’s akin to being in chronic pain. The person experiencing akathisia is probably experiencing a side effect from their medication, not an underlying medical condition (although Parkinson’s can lead to akathisia too sometimes and Guillain Barre syndrome although sometimes akathisia is also misdiagnosed as both).
If people experiencing akathisia end up in a psych ward they may never get out. This is terrible and traumatizing. Their side effect symptoms will most likely be treated with more psych medications, worsening their symptoms and discomfort until they can’t communicate well. People experiencing akathisia cannot be given more psych meds to cover the symptoms (unless it’s a low dose of 15mg of Mirtazapine). If a person you love ends up in emergency due to akathisia or hurting themselves due to the akathisia – make sure to inform every doctor that sees them what they’re suffering from and stop them from using sedative medications to calm them down (as those medications can make akathisia worse and are commonly used in an emergency ward [ketamine and benzodiazepines for example]). Hydromorphone can be used safely, and morphine, and propofol to calm them down without worsening akathisia.
What Does Akathisia Feel Like?
- It can feel like your skin is on fire and the only way to make it stop, is to move.
- It can feel like you have to hit yourself to make the crawling sensations under your skin stop.
- It can feel like you’re being poked with pitch forks.
- It can feel like bugs are crawling under your skin.
- It can be accompanied by an overwhelming feeling of horror and doom and hopelessness which is what frequently leads to suicide.
- It can feel like you’re falling off of a building or like a wild animal is chasing you.
- It can feel like panic attacks and the inability to inhale. Or like your lungs are cut off halfway down. This is not purely psychological these are also physical problems.
- It can feel like you’re going to be stuck like this forever and that someone is punishing you.
- It can fee like you want to jump out of your skin or rip your skin off.
- It can give you strange and unusual aggressive impulses.
- You know that feeling when you feel like you need to flip over to get comfortable in bed? Imagine that x10000, except you can’t get comfortable, plus the sensation of falling off of a building at the same time.
- It can lead to homicide.
- It can lead to suicide.
Remember this isn’t your fault and there are things you can do to get out of the discomfort you’re feeling. Try not to panic.
If you have a patient who is suicidal and they tell you they are suicidal due to akathisia or the inability to not sit still or an overwhelming sense of doom, don’t just give them a psychiatric medication right off the bat. Make absolutely sure they’re not experiencing a side effect from a medication first. And if it is the side effect akathisia – try testing their response to hydromorphone by giving them 2-4mg of hydromorphone in office to give them relief. The patient should respond within 30 minutes by lessening symptoms, and get relief for about 4 hours. If this hydromorphone test relieves their symptoms then at least you and your patient can know that they can get some relief. This can significantly reduce the risk of suicide or violent behaviour due to the side effect. This akathisia side effect has people commit suicide frequently. The danger of them committing suicide is significantly more than the danger of giving them hydromorphone to treat their symptoms until the offending medication/s can be removed and they can recover (this can take months after the medications are removed but recovery does happen and is possible). These people are suffering more than anyone can imagine and they need your help. A low dose of Mirtazapine at 15mg can help as well, but is not always effective and is most effective if used in combination with 2-4mg of hydromorphone every 4 hours during acute symptoms. Do not be tempted to use a longer acting opiate. The longer acting opiates are much more difficult to get off of and can cause akathisia themselves upon weaning. Hydromorphone is safest. I have listed studies below on opiates used to treat akathisia. There aren’t a lot of studies, but there are a few. Once the akathisia is under control and dealt with, and all offending medications are removed, a slow wean off the hydromorphone can be done. If you are not willing to even do a test with hydromorphone – a test with Tylenol 3’s with codeine could also be initiated to at least see how effective another short acting opiate is before trying hydromorphone. Treatment details are below.
How Can You Treat Akathisia?
Here are the steps you can take to eliminate akathisia. It took us 3 years to figure out how to do this, and before we got to this we tried out almost every single medication from around the world to treat the symptoms. Adding in medications made it worse every time until we found hydromorphone. Every other medication made it worse – including longer acting opiates which are very difficult to get off of so aren’t recommended.
- A prescription of low dose Mirtazapine might help (15mg). It helped Dad. Propanolol helps some people as well.
- Hydromorphone (2-4mg every 4 hours) to treat acute symptoms. This is the medication that really works, and really works fast. This may need to be taken round the clock – every 4 hours, when symptoms are severe. Codeine can also work at a similar dose (T3’s for instance) but is less effective. However, this might be easier for a patient to get from their doctor than hydromorphone. Don’t use other opiates – hydromorphone, morphine, and codeine work. Others can trigger akathisia upon cessation particularly the long acting ones.
- Remove all carbs from the diet – strictly and immediately. Move to a plant free ketogenic diet like the lion diet. Support group to get started.
- Wean off offending medications.
- Wait 3-6 weeks at minimum, after offending medications are fully removed for symptoms to resolve fully.
- Wean off of hydromorphone or codeine after akathisia has resolved. A hydromorphone maintenance dosage may be required after akathisia has resolved – (at low doses) if there are still any symptoms (e.g. 1-2mg every 4-6 hours). T1’s or T2’s or T3’s with codeine could also potentially be used to help wean the patient from hydromorphone (or as maintenance).
There are ways to treat this side effect. And quickly. Unfortunately most healthcare providers don’t know of the ways. The fastest thing you can do to give the person experiencing akathisia relief is to give them morphine or hydromorphone. Morphine or hydromorphone is a short acting opiate painkiller and at doses of 2-4mg, akathisia should just halt within 30 minutes. That should be taken every 4 hours to stop symptoms and give relief. However the underlying causes need to be addressed, hydromorphone at 2-4mg every 4 hours isn’t a long term solution.
If your doctor is worried about prescribing a low dose of hydromorphone and suggests another opiate that’s longer acting – don’t agree. It’ll provide some relief but because the longer acting opiates saturate your receptors for longer, your body adjusts to them and they’re harder to get off of than hydromorphone. This is also not well understood by the medical industry. Hydromorphone is easier to get off of than methadone. If they’re still not sure about the prescription ask them to prescribe only a few mg’s and show them in the clinic how it can impact the patients symptoms. Do a test with 2-3mg of hydromorphone and ask the patient if they have relief with their doctor watching. If the doctor sees this, they’re more likely to help.
This will treat symptoms but the underlying cause absolutely needs to be addressed:
All of the offending medications needs to be removed. That could mean every single psychiatric medication someone is on, plus any antibiotics.
Medications that are used to treat akathisia (benzodiazepines, dimenhydrinate, beta blockers, etc.) can also make it worse, not better. That was our experience unfortunately. Other people have positive experiences with these sometimes. We did not at all.
Here’s a list of medications that can cause akathisia:
- Selective Serotonin Reuptake Inhibitors (SSRIs)
- Citalopram (Celexa)
- Escitalopram (Lexapro)
- Fluoxetine (Prozac)
- Paroxetine (Paxil, Pexeva)
- Sertraline (Zoloft)
Serotonin-Norepinephrine Inhibitors (SNRIs)
- Desvenlafaxine (Pristiq, Khedezla)
- Duloxetine (Cymbalta, Irenka)
- Levomilnacipran (Fetzima)
- Milnacipran (Savella)
- Venlafaxine (Effexor XR)
- Norepinephrine-Dopamine Reuptake Inhibitors (NDRIs)
- Amineptine (Survector, Maneon, Directim)
- Bupropion (Wellbutrin, Zyban)
- Desoxypipradrol (2-DPMP)
- Dexmethylphenidate (Focalin)
- Difemetorex (Cleofil)
- Diphenylprolinol (D2PM)
- Fencamfamine (Glucoenergan, Reactivan)
- Sleeping pills
- Typical and Atypical Antipsychotics
- Antinausea drugs
- All others
- Calcium channel blockers
- Fluroquinolones – nobody should ever take these
- Drugs that treat vertigo
- Sedatives before surgery
- Methadone withdrawal
Here’s a list of medications used to treat akathisia that can also make it much worse:
- Antihistamines like hydroxyzine
- Benzodiazepines (may alleviate symptoms for some people but are impossible to get off of later and that withdrawal can also cause akathisia)
- Antinausea drugs
- Any and all psych medications particularly tranquilizers
The danger with removing medications: rapidly removing medications can also cause worsening akathisia, and/or withdrawal.
What happens if you’re stuck on a drug like a benzodiazepine and you’re experiencing akathisia?
You’re in a bad place. And a dangerous place. What we did when my dad was in that place was we treated the akathisia symptoms with hydromorphone and weaned off the offending drug. Once all the offending drugs were removed, including any offending foods that were also triggering his damaged nervous system, his severe symptoms abated after 4 weeks and he was functional at 6 weeks and he stopped using hydromorphone after a few months of recovery and went on tour a few months after that. Seriously. That was after years of trying to find answers however.
How to Avoid Akathisia
Avoid taking psychiatric drugs and antibiotics like fluoroquinolones and use diet to treat your psychiatric symptoms instead. Psych medications are drugs and they are way more dangerous than physicians know. Read studies. The risk of severe side effects is ridiculous. And side effects like “may cause restlessness” are pharmaceutical jargon for “may cause suicidal akathisia”. There is a massive risk of experiencing either akathisia, or suicidality, or restless legs syndrome which is also extremely unpleasant with psychiatric medications. If you’re lucky enough to not have side effects, getting off of psychiatric medications without withdrawal isn’t possible unless you’ve taken them for a very short period of time at a low dose. These medications are not safe and are not a long term solution for psychiatric problems.
Switching to a low carb or to a ketogenic diet might relieve psychiatric symptoms. Those diets have lots of evidence of treating psychiatric symptoms successfully. Even disorders like epilepsy.
If you’re like my family, you may have to go on an all ruminant meat diet – a plant free ketogenic diet called the lion diet. You can read about the diet on this website. I was on SSRI’s for 11 years, and experienced horrific withdrawal when I stopped taking them after my underlying depression was very successfully treated with diet. Like I said earlier, I had withdrawal symptoms like the sensation of falling, an overwhelming sense of doom, nerve pain, and visual hallucinations. I had no idea what was causing the symptoms at the time. Since then (2017), I’ve had to stick to a ruminant meat diet to avoid any psychiatric symptoms, which I do, quite happily, completely medication free. My dad also sticks to this all meat diet to avoid a recurrence of akathisia or depression.
Dangers of psych meds:
Tools if you’re on psych meds (interactions, etc.):
Doctors that understand the danger of akathisia and psych meds: https://rxisk.org/about/team/
Excellent article describing akathisia: https://worldbenzoday.org/akathisia/
The Ashton Protocol – this is a protocol used to get off of your psych medications while reducing the withdrawal symptoms. This is not something Dad could tolerate but definitely a protocol to use if you are able to wean your medications. Much, much safer than any other tapering method: https://benzo.org.uk/manual/
“Many medical professionals don’t recognize akathisia or that it’s a drug-induced state. Instead, they write off the symptoms as a “worsening of mental illness” or other condition. Sometimes they even raise the dose of the offending drug and when the patient’s condition worsens as a result, they may prescribe more medication which can sometimes further exacerbate the problem or that fail to offer relief. If the medical professionals you encounter are ignorant about akathisia or attempt to blame it on “something else”, present them with medical information on the condition or search until you find a knowledgeable physician.”