It is politically incorrect to say medication “noncompliance.” I suppose this is because it gives the idea that the person taking medication is “complying” to some authority figure and not consciously making the decision on their own.
I get that. But whether you call it medication noncompliance or medication non-adherence, the result is the same – the person is not taking their medications as prescribed by a doctor.
And medication noncompliance can lead to devastating consequences not only in the short-term but in the long-term as well. One reader shares her experience in her own words.
A Story of Medication Noncompliance
. . . I got manic in September without being aware of it. I was over productive, spent a lot of money, barely slept, very irritable . . . While manic, I thought I was normal, since I was stable since several months. I was only on a small amount of an antidepressant, mood stabilizer and a tiny amount of antipsychotic.
All this disappeared suddenly. I was out of energy. I was barely able to move, depressed and the most important: productivity disappeared. Couldn’t move or concentrate . . . for the first time of my life maybe, I started having anger crisis, uncontrollable ones. It was like I push a button and become extremely angry. I went through irritability before but never knew such anger. It was all verbal, no violence but very embarrassing.
I got so angry and stupidly stopped my medication.
Why Were You Angry?
I was mainly angry because high productivity was over. I was angry and frustrated, thought I finally became stable. I was angry for being bipolar. I didn’t want to live (by the way I always think about suicide even when I am high). I hated myself and this life and wanted to punish myself.
I wasn’t thinking logically. What I was thinking: I was taking medication and all was fine for several months and in spite of all this, I had mania so why to continue to take the medication! Plus I wanted to suffer physically, to have tangible pain.
What Happened When You Stopped Taking Your Medication?
I stopped taking medication although I knew from previous experience (several years ago) that withdrawal is terrible. I thought that since I was on low doses, the effects won’t be that strong. Well I discovered I was wrong.
The first week I was doing more or less fine. Then I started feeling dizziness, nausea, restlessness. I started feeling than something inside me was boiling. I was extremely tired, empty. I could feel that even my eyes were empty. I was very irritable.
I told my therapist (psychologist) about messing with my medication. He tried for several sessions to convince me to take them again. At the beginning of the third week, I couldn’t continue anymore. Told the psychiatrist, he told me to take a mood stabilizer for few days and an antipsychotic and wait. But my situation was going worse. By the end of that week, I agreed with both the therapist and the psychiatrist that I needed to be hospitalized.
I had to be hospitalized because I couldn’t continue on my own. I was about to collapse. I was crying all the time, not able to work, extremely irritable and tired. And I didn’t trust myself that I could force myself to take medication as prescribed. Any single trigger would have pushed me to stop or to take an overdose. I was very suicidal.
I took me 4 days on an IV antipsychotic to start to improve. What helped me the most is that I knew I was safe there, protected against myself.
How Do You Feel Back on Medication?
I am on more medication now. I am still angry about being bipolar but dealing with this in the therapy. But physically I am doing better and I am less suicidal. And I trust myself that I can control myself concerning taking medication.
How Do You Wish You Had Handled the Situation?
I should have told my doctor first place that I stopped the medication. I should have been more aware about the symptoms of mania. I should have set a system or informed my family about the “warning” symptoms of mania. But overall, I took a good decision by asking to be hospitalized.
Wanted to share it with other bipolars and tell them that it is very very bad and harmful to stop medication.
If You Want to Change Your Medication
As always, it is your right to change your treatment plan but as this reader has shared, if you do it the wrong way, you may end up in the hospital or worse. Whenever you make a change it needs to be overseen by a doctor.
And if you do make a mistake and stop taking your medication – be honest and tell your doctor so they can help you. This person did the right thing by admitting she needed help. She got it, and now she’s able to share this message with you. Listen to her.
Image by Flickr user Damian Gadal.
D. Flowers-
I also took Wellbutrin, and it, too, made me worse. Mania, drug use/abuse, anger and episodes of crazy violence. Looking back it was obvious that the medication was to blame. I was so mad at myself for how I was acting. I believe it is common for this medication to make bipolar symptoms worse.
After my mum had taken lithium for 23yrs it had killed her thyroid and her kidneys were very week I weened her of it.lithium had never stopped depression,looking back mum was far worse,and it never stopped mania.since being of it mum is feeling tired all the time but at 81 I expect her to have a nap in the afternoons.we have tried all the mood stabilisers, and most had very bad side effects also making mum fall having stitches.mum is sensitive to meds so after years of trying them all she is just on sertraline.just upped the dose to 150m and waiting for the lift to happen.its anxiety that’s the worst for mum so she has diazapan that helps with this.4 physciatrist just havnt helped with meds.tried them all and mum is like a zombie with them.scared to try anymore just don’t want her falling and breaking her hip.life with bipolar is hell.
This is a great article, it’s a great idea for a blog post for me as well (haha, always looking for those). I love your website and all the information you offer about bipolar disorder. You’re kind of my own motivational speaker just for me , lol. I admire a lot of what you do and try to do do what I can in my own way too. I’m trying to get the word out about what bipolar disorder really is and I’m doing what I can to stomp out the stigma facing us those with MI. I hope one day my name is eventually as well known as yours when it comes to info on bipolar disorder. Thank you for sharing this story, whoever it is that shared it. You guys are inspirational heroes.
I have been an extremely compliant patient over the years (24 years) that I have been treated, but I have stopped medication a few times when I was having terrible side effects that my old psychiatrist ignored. He refused to change my medication. I have had a new psychiatrist for 2 years (for the reason that the old psychiatrist ignored my side effects) and she discovered that I was having lithium toxicity at times and that lithium was no longer working for me and was causing a host of terrible side effects. She prescribed 3 new medications (Trileptal, Lamictal, and Saphris) after trying some other ones, and now I am feeling better than ever. She was surprised that I had been as compliant as I had for so long even though I was experiencing terrible and life threatening (over time) side effects. I am very thankful to have a good, understanding side effects. If your psychiatrist refuses to try anything new, you might want to consider getting a new psychiatrist.
The road to accepted behaviors and mental self control has been a long one for me. I did everything wrong before I considered success. Meds are now taken religously. The long term consequence has been a more predictable life. Yes, episodes randomly occur, that is to be expected. Accepting the consequences of an illness is not a choice. Nor is the demand to see my doctor in the state of Florida. A controlled substance perscription in Florida creates automatic quarterly visits to the prescribing doctor. As my doctor said at the last visit, we are becoming friends. Making light of life shows the way. (comments made are the due process of rhetoric)
I just discovered this website after I got a Twitter notification that “Natasha Tracy” is following me. I wondered what was the connection, so I clicked through and found this website.
I’ve been in denial of being bipolar for 17 years. In 1995 I was diagnosed as Bipolar II. I was 19 years old. My doctor gave me Paxil, then Prozac, which I am now discovering makes manic episodes worse. So I went off the meds and never saw that doctor again since they didn’t work…and I found the doctor condescending.
My hypomania turned into Bipolar I after I had my first manic episode with “mild” psychosis in 1999. Again in 2006. The psychosis was more severe as I invited my friends in my “hallucinations.” Again in 2009 when I rushed to the emergency room after a night of a suicide attempt (saved by my roommate) and feeling not quite in my body enough to tell whether I was going to hurt myself the next morning.
Again recently. Not quite psychotic, but definitely suicidal, in and out of the emergency room 3 times in in the matter of two weeks. This is a big deal for me because I spent the last approx. 17 years in denial, along with my friends and family, that something was wrong.
My current psychiatrist is a nightmare, prescribing me meds that make my depression and manic episodes worse. Talking to me like I’m stupid. Refusing to listen to me. I picked up my medical records after our last appointment together and discovered that she thought i needed anti-psychotic. She wrote that in her notes, but did not prescribe it to me. She did not even mention it! She just re-ordered the Wellbutrin, which is now known to make suicidal/manic people more suicidal. She knows how many times I was in the emergency room for suicidal ideation. I’ve begged her on the phone to prescribe me SOMETHING to make these panic attacks go away. She refused. As she refused I remained in complete and utter mental hell.
I went to a counseling by a someone different than my psychiatrist. She pushed my buttons while I was having a panic attack. I then made the decision to raise hell at that hospital. SOMEBODY was going to listen to me, damn it. I was not going to leave without the correct meds. I blessedly got a nurse practitioner in the emergency room who presribed me what I needed. Finally. After two weeks of manic hell.
So I’d say it’s almost understandable why some practice “medical non-compliance.” Practicing medical non-compliance saved my life!
Hi D. Flowers,
You might be interested to know I wrote a piece on treatment noncompliance occasionally being “good” http://www.healthline.com/health-blogs/bipolar-bites/can-treatment-noncompliance-be-good
Because yes, in some cases, it does make sense, it just so happens, in the majority of cases, it doesn’t.
– Natasha Tracy
Thank you for your balanced perspective
Hi D. Flowers,
Thanks. I try.
– Natasha Tracy
I probably fall into the “medication noncompliance” zone on a weekly basis. Whenever I go into my depressed mode, I’ll tend to skip taking my meds a few days. I’ve not really noticed a difference, in my thoughts or physical problems. During my depression cycles my brain is like mush anyway. All I want to do is deaden how I feel and hide from everything and everybody. I will sleep as much as possible (when I can slow my toughts down enough).
This last time though, I had what felt like electrical zaps occurring all over my head, not strong, about the strength of getting zapped whenever there is a lot of static electricity in the air. Just strong enough to let ya know ya got zapped. The zaps came like ten in a row about every five minutes or so. The zaps certainly had me wondering as to why such a thing would be happening to me. I eventually came to the conclusion that it was possibly due to not taking my meds. I looked at my calendar and realized that I hadn’t taken any for about five or six days.
I have started about three days ago taking my meds again. I was well into my hypomania mode by the end of that day. So, here it is three days later, I'[m back on my meds, been awake all this time.
Hi Richard,
Thanks for commenting. I’m sorry to hear you have weekly troubles with depression, although I know the feeling. All I can suggest is to stress that it’s important to take you medication as prescribed because that’s the only way to keep an even level of the chemicals in your blood stream. If you do not take them regularly, you get spikes of medication and this can destabilize you and make you much worse. And by taking you medication as prescribed you give it the chance to really work for you. If you miss a few days frequently, you will never know if it could be successful.
I recommend setting a reminder on your phone or computer or a clock to remind you to take them. I have other methods too such as leaving my medications in the sink so that as soon as I go to wash my face it’s obvious that I need to take my meds. I pretty much trip over them.
As far as the zapping go, if I had to guess I’d say you’re taking velafaxine (Effexor) and brain zaps are a pretty common withdrawal effect of that medication so you would be correct – it’s due to not taking your meds.
If you’re going into hypomania from the meds you’re not on the right meds. If you’re taking an antidepressant like venlafaxine and you’re bipolar, you need to be taking a mood stabilizer as well. This might be lithium or an anticonvulsant or an antipsychotic. No matter what – report the hypomania to your doctor RIGHT AWAY. They _need_ to know this is going on because, like I said, it indicates there is something wrong with your medication. And going into hypomania from medication can make you worse both in the long and short term.
I recommend you read this about antidepressants and bipolar disorder: http://www.psycheducation.org/bipolar/controversy.htmi
If you’re still not sleeping, please call your doctor. Not sleeping will make you worse. Trust me.
– Natasha Tracy
Gosh, these stories fit rather well with Mr Robert Whittaker’s findings in Anatomy of an epidemic that recovery from Bipolar was very frequent before the drugs were developed, mania then was seldom seen as a chronic condition.
He says the type of rapid cycling bipolar you have was almost unheard of before the drugs. His thesis, which he presents quite a bit of evidence for, is that this condition is mainly created by the drugs, especiually in the USA where poly drugging in high doses is a common practice, and that Dr’s then prescribe other drugs for the drug induced mania and mood swings.
I think his theory is more hopeful than standard medical practice because it implies that recovery is possible, but these stories don’t.
If you want to come off your medication then it is sensible to find a Dr who shares your point of view. If you can’t then it is sensible to download the Icarus Project’s Harm Reduction Guide To Coming Off Psychiatric Drugs (a USA publication) http://theicarusproject.net/HarmReductionGuideComingOffPsychDrugs
Or Mind’s Making Sense Of Coming Off Psychiatric Drugs (a UK publication) http://www.mind.org.uk/help/medical_and_alternative_care/making_sense_of_coming_off_psychiatric_drugs which is based on about 300 interviews with service users.
After doing the research into service users experiences of psychiatric drugs MIND, a major UK mental health charity, changed their recommendations on coming off psychiatric drugs and no longer recommend that people consult with Dr’s. They found that there was no difference in the success rates or the harm that people came to if they did or did not consult with Dr’s. But then most Dr’s have little knowledge of the withdrawal effects of psychiatric medications as there education is so heavily influenced by drug companies.
It would be nice to see some articles on drug free treatments of bipolar on this blog. Beyond Fear by psychologist Dorothy Rowe has an excellent chapter on mania and lists a few books by people who have successfully chosen the med free approach and recovered and also those who chose the management by meds approach and managed succesful lives – though always blighted by the idea that they have a life long condition that may reoccur at any time if they do not take the meds. http://www.amazon.co.uk/Beyond-Fear-Dorothy-Rowe/dp/0007246595
Hi John,
There are many fine critiques of Whittaker’s work so I won’t get into it here, suffice it to say, he does not present nearly as much “evidence” as people seem to suggest.
There is no doubt that medicating people with bipolar disorder with antidepressants is risky and should only be done in certain situations. That point is clearly made in literature, however, it hasn’t necessarily filtered down to GPs.
And for your information, I have written many pieces here on non-medication topics.
There’s NAC: https://natashatracy.com/bipolar-disorder/n-acetylcysteine-nac-inexpensive-treatment-bipolar-depression/
There are sleep techniques: https://natashatracy.com/mental-illness-issues/good-nights-sleep-brain-training/
There’s getting off desvelafaxine: https://natashatracy.com/treatment-issues/withdrawal/antidepressants-effexorpristiq-venlafaxinedesvenlafaxine/
There’s an alternative medicine resource: https://natashatracy.com/treatment-issues/diagnosis/alternative-medicine-resource-fad-diagnoses-st-johns-wort/
There’s chronotherapy: https://natashatracy.com/features/triple-chronotherapy-like-work/
And many others.
– Natasha Tracy
And for the record, I don’t care what some charity says – you got prescribed medications by a doctor and you need to go through them when you want to stop or change those medications.
It is irresponsible and possibly lethal to suggest otherwise.
– Natasha
I rapid cycled gor years before I was ever diagnosed or medicated. I’m not saying meds can’t make it worse–some did 7 til they found the right cocktail for me–but it was going on for a long time before meds became a part of my life.
In my life, exposure to anger, including my own, is very destructive. My brain is extremely sensitive to fight or flight response – as it lived in those juices for several years before the admission that something was wrong. It was as if I blew out the synapses by being exposed to chronic stress, anger, personal financial difficulties, raising a difficult child. Meditation has been extremely helpful, however, it’s not always possible to do in the face of negativity going on around me; the body remains in a defensive posture. Sometimes I wish I could be hospitalized just for the break from negative people, where the focus is on calming down the brain and helping it make endorphins vs fight or flight response. In Canada though, psych beds are almost non-existant. I’m always happy to hear that hospitalization has been available and has helped. Thanks for sharing this story – I take my meds and am grateful when they work. I don’t find that they diminish creativity or productivity, but the opposite, they enable me to achieve some kind of balance, where sleep occurs at night and productivity happens during the day. My bipolar pattern was to sleep/meditate during the day to escape the negativity around me, then to stay up at night in a manic high to create and express myself. This is obviously very hard on the body; at one point I was so physically ill from sleep loss that I almost lost the body.
Hi Darcie,
Thanks for sharing that and I’m glad that you’re finding meds helpful (at least, most of the time). And meditation can be a beautiful thing but takes practice, which it sounds like you have had.
I’m in Canada too and I don’t know where you are, but psych beds are around if you really need one. Not so much for a “break” though. I hope you’re getting therapy though because that can help you deal with negativity around you.
I’m glad to hear you’ve made sleeping more of a priority! You’re right, your previously life does sound pretty hard on the body.
– Natasha
I’m in western BC. In regards to a psych bed, my experience has been that I would need to actually declare the intent to kill myself or harm another in order to get a bed as an inpatient (the last time I dipped into a heavy depression, the doc talked me out of the hospital, saying, ‘maybe you’d get a bed in the hallway of the ER’- that didn’t seem like much of a relief from the symptoms). The last time I was feeling suicidal, it was because I wanted relief from my roles in life (namely motherhood) and the symptoms of mixed episodes (I was hypomanic for many years before the mixed episodes began to occur, I love the hypomania, until the sleep loss catches up, anyway). However I had/have no intention of actually committing suicide – I’d never do that to myself or my family – I’ve left for Arizona a few times to recover – but I’d never exit by way of suicide. Instead I’ve been working very hard at getting the negativity out of my life. That’s hard to do with a negative temperament child, who is the ‘trigger’ of the chronic sleep loss and the fight or flight reponse. My child desperately needs an assessment at Children’s Hospital in Vancouver, and there is a huge waitlist for that. We’re working with the Ministry for Children and Families, with their child psychiatrist and their child psychologists, so far with the ‘negative temp’ pseudo diagnosis (it seems they must call her something less than bipolar due to lack of treatment available, and a hesitation to diagnose bipolar at age 8), but with limited success; even just last night, I was hiding downstairs in the van in the underground parking while my kid freaked out for no discernable reasons with this long string of non-existant faults, accusations and other spiteful declarations (this happens every other night, since birth, both hubby and I have raised four other ‘normal’ kids, we’ve known this child is different since birth, starting with extreme colic and at age 8, she still cries and screams at bedtime, and if she’s had a good day, we can look forward to hell night). My poor hubby stayed with her while I ‘escaped’ for a bit. I routinely hear how she hates me and her dad, hates her life, hates her friends, everyone hates her – just totally untrue stuff, the declarations of mental illness, the definition of ‘crazy’; it’s no wonder I now have a bipolar brain. I worry about getting kicked out of our apartment due to her freak outs. Well, I’m babbling now.. but it does help to release the crap.
Hi Darcie,
Oh, I agree, you have to be suicidal to get a bed, but I consider that to be pretty normal. It’s triage. If you’re not actively going to harm yourself then treatment should be handled outpatient.
I’m sorry about the waitlist for your child, I can only assume that is very frustrating. It is good though that they are hesitant to diagnose bipolar at age 8 – that shows they are being conscientious. No one wants to inappropriately label or treat a child. I think with children we have to be absolutely as careful as possible and as far away from meds as possible. If we can.
Maybe what might work for you is a support group. Either one for your own mental illness or one for parents with a mentally ill child. There are lots of support groups with people just like you who can help you through these rough times. And that can build a community for you to lean on – which we all can use.
– Natasha Tracy
Thanks for this personal story. I know someone right now who is struggling with compliance and it might help to hear a personal story about noncompliance. I’ve always had a battle to swallow all the pills every day. Lately, with half a dozen meds, it’s been harder. Your story has really given me some oomph to keep going and to talk to my doctor about weening off some of the meds a little quicker (if that is possible).
James,
Good for you. I know how much personal stories can help people which is why I’m happy to feature them. And good on you for working with your doctor. Weaning off meds takes time, but the safety it gives is worth it.
Good luck.
– Natasha Tracy
I ended up off meds for a week as I had a chest infection and couldn’t get to my chemist to collect my script – plus my sleeping patterns were out so it was shut when I was awake. I called my MH duty team who helpfully said “you should have picked it up” and “well you’ll just have to wait and collect it when you can”. Sadly help isn’t always there if you do want it. I had to suffer a week of flu like med withdrawl as well as paranoia and depressive symptoms.
Marisa,
I’m sorry to hear that, it’s awful. You’re right, sometimes help isn’t available even when we need and want it. It’s good you reached out about your problem but a shame they couldn’t help.
Next time, don’t get a chest infection ;) (More uber-helpful advice.)
– Natasha
The old saying,” sometimes we have to learn the hard way”. Truly, noncompliance of medication can be very dangerous. This is an important story for all bipolar’s to read.
Hello Dr. Gunten,
Sometimes we all have to learn the heard way :)
The person contacted me and was passionate about sharing their story though and I think it’s because she’s hoping it will help others from having to learn in that hard way. She’s brave for sharing her story.
– Natasha Tracy
Let me share a story from my e-book. “Power of Positivity” :
When I was instructed by my psychiatrist to stay on Lithium for the rest of my life, (He was a very strong minded Doc and did not pull any punches with me), I found myself fighting the concept of using Lithium indefinitely, so I came up with my own medical defence on the dangers of Lithium. I shared with him that we needed to evaluate tubular function and glomerular function in the kidney, and morphologic changes of glomerular and interstitial fibrosis and nephron atrophy had been reported in patients on chronic Lithium therapy.
He agreed wholeheartedly, clapping his hands, as he nodded in approval of my overly concerned dissertation. Leaning back in his chair, he looked me straight in the eyes, and said; “So, would rather die from the possibility of glomerulitis or suicide?” He went on to say that the incidents of suicide, in my personal case, would be more problematic, than any kidney problems that may exist with Lithium. I had to reluctantly agree.
Dr Fred
Hi Dr. Fred,
Great anecdote. Suicide is the biggest risk any of us face and it far outweighs the dangers of meds in most cases.
Nice to know you know so many big words though ;)
– Natasha Tracy