Billiam James’ Akathisia Anthem released last week and available HERE is timely. Since this headline in Newsweek in May 2013, things have got worse. In America since 2015, life expectancy has been falling and in other developed countries it has stopped rising.
Recent American studies have fingered rising suicide rates as one factor in this fall.
In March 2013 in a post Left Hanging, we gave a list of 100 drugs that can cause suicide. This was based on drugs the regulators had described as capable of causing suicide or drugs that companies in the small print of their labels have linked to depression and suicidality.
Pharmaceutical company lawyers have shown interest in this list. The only drug on the list they quibbled with was Flomax. The implicit message seemed to be it would be difficult for them to argue with the other 99.
In June of this year, a study run from Chicago – available Here – claimed there were up to 200 drugs linked to people becoming depressed or suicidal.
The Chicago study showed that being on one drug companies have noted a drug is linked to reports of people becoming depressed or suicidal increases the risk of becoming depressed or suicidal, being on two doubles that risk and being on three or more triples the risk. These are average figures – some drugs and some combinations are worse.
The PPI group of drugs used for acid and reflux seem to be among the more problematic drugs.
This was not a matter of being on more drugs being a problem in that if the drugs didn’t have depression or suicide in the label, whether you were on two or three made no difference.
Stimulated by this and as part of development work for Taper MD, we have gone back to generate a further list of drugs causing Depression/Suicide. The current draft now has 250+ drugs on it.
Over the next few weeks as we track down combination drugs, we expect the list to expand toward 500 drugs.
In due course when we include all trade names – some drugs like paroxetine can have up to 50 trade names – it is likely that over 1000 drug names will be linked to people becoming depressed or suicidal.
When a drug causes depression or suicidality, this is akathisia by any other name.
Of course there are variations within the drug induced emotional turmoil (DIET) spectrum with perhaps malignant restlessness at one end and tearful brittleness at another and at some point we may be able to distinguish reliably between these but for the moment we can’t – because although these problems have been on our radar for over 60 years companies and clinicians have blocked any exploration of what is involved.
The provisional list is HERE with the categories of drugs listed below.
We welcome all input from anyone who has reasonable evidence linking any drug to suicidality or depression.
There are two areas in particular where input would be welcome. One is Cancer drugs. These are generally regarded as the most toxic of drugs but the side effects part of the label for these drugs makes them look harmless compared to Aspirin for instance. The likelihood is that people put any depression, dysphoria or suicidality down to their illness rather than blame the drug. We need feedback from people on the drugs or those living with them.
The other group of drugs is typified by Invermectin, an anti-parasitic drug, used in Sub-Sahara. This causes depression but no-one gets to hear about it. We want to hear about other drugs used in African or Asian settings that might not be known about in Europe or America.
The categories of drugs causing depression include:
I suffered a host of physical and psychological symptoms when attempting to discontinue Risperidone in 2012. The attempt to discontinue this medication had a cascade effect that that would affect the next 5 years resulting in numerous psychotropic medication changes.
Now my symptoms have a name: Akathisia.
My psychiatrist at the time taught, and continues to teach, at a reputable university specializing in mood disorders, and he watched me suffer and documented I was experiencing dysphoria on several occasions and prescribed Nabilone for pain.
He never came clean and identified any of my symptoms as a result of the medications he prescribed and easily transferred my medical charts when I requested another mental health care provider.
How can a psychiatrist caring for over 700 patients a year for several decades not have an understanding of Akathisia resulting from discontinuing antipsychotics.
Akathisia is the “Elephant in the Room” and healthcare providers need to be held accountable.
Totally endorse what Victoria says here. Our son had terrible AKATHISIA when on Risperidone, which led to a lifetime of similar experiences as Victoria, till his prescripticide. How indeed CAN a psychiatrist of such standing as she describes, not realise that antipsychotics, (and many other drugs) cause life ruining AKATHISIA, and have let her suffer in ignorance. Because to admit it would blow modern psychiatry to pieces, myths would be exploded, lawsuits for compensation would bankrupt the prescribers and the makers, and the fallout would be unimaginable (and 😊 wonderful….) That’s why. But the elephants are on the march now , painted like Elmer and getting noticed.
I was wondering about anaesthetics too, not on the list here as far as I can see. After certain local dental anaesthetics I can feel very strange and anxious, shaky, mind in freefall etc. Also, what about Fentanyl as an anaesthetic, could that cause strange thoughts, anxiety, feelings of disassociation, possible AKATHISIA?
What dental medications did you react to and how long did it last?
Invermectin is what is given to horses and other farm animals to kill internal parasites. I didn’t know that it could be prescribed for humans!
I was on proton pump inhibitors for twenty years. Then I started destrogeal in 2016 and was prescribed metoclopramide in 2017 to which I had a reaction in Dec. Your article explains why I had this reaction at that time and not others. It also tells me im right to come off the ppi which I cut and had terrible akathisia again on discontinuation. At the time of the reaction I was also taking clarithromycin and I found this article which may explain why I had such an intense reaction:
The article basically says that clarithromycin inhibits pgp transporters across the blood brain barrier and results in an increase in metoclopramide in the brain. Your article fills in the gaps and assures me that the worst is now over, it will not be as bad as that again and it allows me to make informed decisions for myself.
As far as cancer chemo induced akathisia/depression/anxiety are concerned: I’ve noted with two friends who’ve spent the past year having surgery then much chemo for breast cancer that while the bouts of chemo are underway, the toxic effects are so gross, both have just focused on coping with sickness, feeling ghastly and the rest – but both have subsequently suffered from, certainly, depression. Trouble is, how on earth can one distinguish between the psychological impact of facing death and getting through being poisoned and the possibility that the drugs have psychiatric effects in themselves? It’s possible to formulate an impenetrable psychological argument for why one feels agitated/fed up/ worried/tearful post cancer treatment – totally accepted, and counselling is available.
Of note also and cancer chemo related although might come under the ‘disease modifying agent’ heading on the list. The current treatment for wet macular degeneration in the eye – the growth of new, rogue, fragile blood vessels at the back of the eye that leak and cause serious visual impairment – is derived from a cancer drug. Avastin was originally used to treat bowel cancer – not very successfully – but turns out to be fairly effective in wet MD. It works by suppressing a protein – vascular endothelial growth factor – essential to foetal development and wound healing and some tumours (which need a supply of blood) because VEGF enables the creation of new blood vessels. Shutting it down with a chemical like avastin and subsequent similar drugs has provided the first reasonably effective treatment for wet MD. What else chemically suppressing VEGF might be doing elsewhere in the body doesn’t seem to have been considered much.
I know this because I’ve been having the treatment – injections of anti-VEGF directly into the eye. The unpleasantness of the procedure apart – I have got used to the jabs – I get unpleasant systemic effects a week or so after each jab: aches, the worst back ache ever, shooting pains down my legs, headache, runny nose, a bit of nausea, feeling a bit foggy. What I also know now, after 15 months, is that I’ve also experienced low mood, grumpiness (agitation?) , dysthymia, unduly severe anxiety around wet MD and its consequences – and, just this week, vivid dreams and the worst nightmares I’ve had since olanzapine withdrawal. The kind that get you out of bed sweating and trying to calm down and tell yourself it was only a dream for 15 minutes.
It occurs to me every time I have an injection that I’m probably not alone but as I’m twenty years younger than everyone else in the clinic the older people in their 80s and 90s are probably more stoical than me, less inclined to moan about their treatment, grateful to the doctors, and may well have other health problems that make them feel shit anyway, let alone being on multiple meds.
The only side effects the ophthalmologists are interested in are infections in the eye caused by the procedure itself. I began by reporting the aches etc but after a couple of ‘can’t be related to the drug’ have given up, although I did put some on the MHRA/yellow card website.
I could construct a watertight argument that the emotional/psychological/psychiatric effects of having wet MD are entirely down to the situation/disease and absolutely nothing to do with the drugs – no one likes the prospect of losing functional sight. But – I’ve had cancer and (surgical) treatment without lapsing into chronic anxiety and low mood. I have a number of chronic ailments which I worry about sporadically but without feeling so low. At the moment I can see fine, to read and use the computer and I’m not a great one for fretting about the future. It isn’t like me, if that makes sense. The nightmares feel like a clincher. All that is a long-winded way of saying I reckon the anti-VEGF drugs should be added to the list!
Akathisia is unlike any depression/anxiety that I have ever experienced and I was severe. For me it was accompanied by a physical sensation unlike which I had never experienced before. It was immediate and intense within 1 hour of taking the drug (metoclopramide). Below is adescription of the akathisia that I have experienced. I posted in an akathisia group and they corroborated the account:
It is difficult to describe and therefore for people to understand, because it is unlike anything I have ever experienced before. It is like having your teeth filed and at the most excruciating point it freezes and leaves your nerves in this state. It caused me extreme agitation because there was nothing I could due to tune it out. At its worst point it was in every cell in my body, there was no escape, no respite and this level of agitation kept me awake for four days with no sleep, I was desperate and suicidal.
In my body Akathisia felt like:
Parts of the front of my brain were filled with concrete.
The rest of the front of my brain was frantic trying to get through the concrete but just not happening and this was the source of my agitation.
I had a rod of absolute terror in my chest which somehow seemed to connect my stomach and brain in some kind of escalating feedback loop of dire distress, feeling like I was locked in my own body.
I had sensations in my arms and legs that were excruciating, like being electrocuted but by a continuous current, same intensity/frequency.
I had a feeling in my ligaments like they were a mass of rubber bands and only relieved by moving. I was agitated when this was coming from ligaments that I couldn’t move, especially deep within my right shoulder
The level of agitation was paralysing and I got some relief from moving but this was around two weeks later.
Other effects were:
A certainty I was going to die
A feeling that I had damaged my nervous system beyond repair
A total lack of empathy for other people, I did not care about anyone else
I did not care about the consequences of my actions.
Short-term memory loss
Loss of self
Inability to converse
Perceptual disturbance (shadows 3d objects)
I had the same reaction to this medication after surgery and ended up in a psychiatric hospital for three weeks with it being described as just “severe anxiousness”. It is the closest thing to hell one can experience
Thanks for this apt description – it‘s exactly what I felt after trying to stop Prozac…it was horrible, an inhuman experience… and reinstating of the drug and adding some others (quetiapine, promethazine) made it quit worse. I suffered for half a year extremely, almost killed myself…then it comes and goes depending on triggers like stress.
Doctors always told me it was part of my mental illness… but now I know it was due to the drugs. What a damaged psychiatric system…
How long did it last for you?? Hope you are ok now.
Sally’s des ription of the mental effects of cancer treatment lead one to surmise that it’s totally logical that those taking RoAccutane/isotretinoin for acne, this also being a chemotherapy drug, would have ghastly mental side effects. So why on earth is it prescribed for a skin condition which is not cancer. And these days, being dished out so liberally? And then, when recipients get AKATHISIA as my son did, being told they are suffering from anxiety, and given antidepressants which make them worse. MP Col Bob Stewart, in a debate at Westminster about the safety of this drug, referred to friends of his who had suffered such effects on chemotherapy, so why not on this chemo drug too?
As to Samantha Long’s graphic description of AKATHISIA, I can recognise many elements that I experienced coming off steroids after only an 11 day course. The head pain and the waves rippling down head to foot in the body, the ‘elastic bands’ in the muscles. The extreme anxiety which persisted for 9 months. The belief that I was going to die. I remember trying to get my then GP to understand. “You need a psychiatrist”, he barked. “You may think you are experiencing these things but they are all in your mind, steroids cannot cause this, we use them to TREAT allergies and feelings like you describe.” I felt so ill I didn’t care about anything, I just hoped I’d die quickly and it would all soon be over. I couldn’t rally myself, I just thought I’d gone totally mad. It was the worst thing I ever experienced so far in my life. I was about 50 at the time. Then my son had it on Seroxat following RoAccutane/isotretinoin and when we tried to explain it to doctors, they insisted he was copycatting my earlier ‘anxiety’ experience, ie I had put it into his mind and I was making him think he was like me, influencing him, making him mentally ill! His got so bad eventually on Olanzapine that he drowned himself. I so wish I’d known that AKATHISIA existed then. I might have saved him, not sure how, but he died because he thought he was mad too.
When I had my episode, instead of a psychiatrist, I instead saw privately on referral from the ignorant GP, an allergy specialist who diagnosed multiple spreading sensitivities (but AKATHISIA was not mentioned) and later began taking UltraClear Sustain, (vitamins, minerals, including particularly B6, and various amino acids). My food sensitivities began to subside, and the inability to watch TV grew better. When I had been trying to before it was like my mind was running faster than the storyline in the programme I was watching, like it was out of control. Only football, which ran fast, was bearable to watch. I couldn’t read, it was too ‘slow’. It was as though my mind was an engine, not quietly idling but revving, and I had to keep moving to avoid it overheating and blowing up.
Paxil was my introduction to akathisia. It wasn’t intense but I moved a lot while asleep. It was diagnosed as RLS. I remember riding in a car and my legs felt like there was an electrical current and I needed to stretch and move, it was relentless. I was given Ropinirole after a sleep study for insomnia. The symptoms were mostly in the evening with a rare episode during times I had to sit. I stood at the back of movie theaters holding my grandson. My bed was away from the wall when I woke up. I was CTd off Paxil after 12 years and Ambien after 10 years. I continued to take the Ropinirole. The akathisia in my thighs came on earlier in the evening and I needed larger doses. I was given Seroquel for insomnia. I woke up with my legs moving in a running motion, my arms twirling in the air. I tapered off in one month and those motions went away. I was given Clonazepam by a sleep medicine doctor. The akathisia was milder but I had two episodes of extreme distress and curled up in the floor with my legs and arms held down by the weight of my body. My brain felt like I was going insane. I took extra Ropinirole and the episodes lasted about 2 hours. I had been taking Lisinopril, the akathisia continued in my legs. My medication was changed to Amlodipine. I had the worst akathisia unlike anything I could explain. It started with an inner vibration in my chest when I first woke up. Another couple of weeks went by and my arms would jerk out and my fists would clench. Another week and my legs were jerking. Then the worst of all symptoms…my brain felt like a million bare wires touching each other and shorting out. It immediately shot into my thighs. I stopped the Amlodipine and weeks went by. I couldn’t eat because food brought the symptoms on stronger. It subsided but would appear again unexpectedly. I was taking Clonidine and some days Lisinopril. I finally figured out that the days I took Lisinopril were the days the akathisia was worse and stopped the drug. I eventually stopped Clonidine. I’m continuing a taper of the Clonazepam and lowered my dose of Ropinirole, which saved my life during the worst of the symptoms. When the insanity of akathisia hit, I split the Ropinirole dose and took a quarter of it and I usually fell asleep a couple of hours but when I woke up I felt normal. That continued for 18 months. I now have the mild symptoms of akathisia given in all the articles on the subject, the restlessness, feeling a need to move, etc. The hell I entered when I took Amlodipine is gone but I am left with what seems to be a permanent state of restlessness at different times during the day. I have maybe three days a month when I feel normal.
I have looked and looked, there are a lot of places where it says what causes akathisia or how to avoid ever having it, but once having it the information stops there. I have had Akathisia 4 times now all from different medications and getting no help from the Doctors that gave the prescription. Most of these medications are for normal things, like a blood pressure pill or medications given before surgery. There is no information or help after one has gotten akathisia. This is what we need and will at least give NEW suffers some security and hope.
When I first got it and then it went away I thought this was over, but no 3 more times and no one to help on what can be taken or not. Like anti-biotics or if I need a test that requires something. GPs saying this does not exist, Cardiologists saying the same thing. There should be some sort of help for people who have akathisia and so far I have not found any.
Lots of books, papers, descriptions of symptoms but nothing on any help or answers its very disheartening to say the least. We need to know what to do next and how to protect our-self from further injury.