Reasons for Bipolar Medication Non-Compliance
One night in 2007, I started a new antipsychotic. It was to be taken at dinner time. I did as told and took it at the universal dinner time of 6 pm.
By 7 pm, I had mostly lost touch with reality. I was suddenly so tired that my eyes wouldn’t open but I was far too anxious, scared and twitchy to go to sleep. I felt incredibly ill. I was frantic, terrified and panicked. I was thrashing in a sharp, steel cage between sleep and wake with no way out. I cannot express to you the horror of that night.
Bipolar Medication Non-Compliance Types
Immediate Medication Non-Compliance
Medication non-compliance is when a person is prescribed a medication and then decides to alter the taking of that regimen unilaterally. By immediate, I mean that right after the initial prescription, the person stops taking the medication. So, if a person stops taking a medication on day 4 due to side effects but doesn’t see their doctor for 2 months, that is non-compliance, although not the most bothersome kind.
Long-Term Bipolar Medication Non-Compliance
The more problematic bipolar medication non-compliance scenario is when a person has been on a medication for a longer period of time and suddenly stops taking it. Again, this is often due to side effects. People get tired of gaining weight, or hand tremors, or unstoppable hunger, or sleeping 12 hours a day or constant nausea and they stop taking the drug. This is often an immediate discontinuation of the drug without a taper as they are doing it without talking to their doctor, and of course, discontinuation disrupts their routine.
Yay! I’m Better! Non-Compliance
Perhaps the sneakiest form of non-compliance comes when the bipolar medication works and the person is feeling better. The stars have aligned, the doctor was brilliant, the patient was lucky and suddenly they start feeling like themselves again. For the first time in a long time they are happy, stable, sane. And of course, as everyone knows, sane people don’t need medication. So they stop taking their medication. Why would they take it if they feel good? The fact that it was the medication that caused this feeling is overlooked.
Other Reasons for Medication Non-Compliance:
- A worsening of the illness
- Medication not working
- An attempt to assert control over their situation
- An attempt to be seen as normal by other people
- Lack of money to purchase drugs
- Not seeing the doctor for a prescription
- And on and on and on
Bipolar Medication Non-Compliance With Sudden Stops
The problem is, suddenly stopping a drug without medical supervision is the wrong approach. People do it, often, because they know the doctor wouldn’t like them going off of medication. Their doctor might pressure them to stay on the medication. And they don’t want that. They want off. I understand this reasoning, but it isn’t a good enough reason not to talk to a doctor.
When people stop their drug suddenly, they go through withdrawal. Withdrawal can be very nasty, or very mild, depending on the drug and the person. In most cases, the person is not going to enjoy it in the least, and it very likely could induce depression or mania.
Once the withdrawal is over the person is left without medication. The person is left without the one thing that was treating their mental illness. The person is left without their safety net. While sometimes at first, it feels really good to be without all the side effects, inevitably you are left with what you started with – an untreated mental illness.
Bipolar medication non-compliance can lead to depression, mania, hypomania, self-harm, psychosis, hospitalization or even death. It is extremely serious.
But I Want Off My Drug!
Okay, so I completely get why people want off their drugs. I’ve had horrible things happen to me, others have had horrible things happen to them, getting off a drug is a perfectly reasonable response in many cases. So:
- Talk to your doctor
- Make your needs known openly and honestly
- If your doctor doesn’t agree, work out an alternative solution you can both live with
- Don’t leave their office until you’re satisfied you can live with the plan
- Always taper off a drug
- Keep all doctor’s appointments
- Report any mood changes to your doctor
That’s it. Just talk to your doctor. I know it’s sometimes harder than it sounds, but that’s what you need to do. Drug non-compliance is often a sign of a worsening mental illness. If that’s not your problem, then you have the ability to do the above.
Don’t make a mistake today that could land you in the hospital tomorrow.
Tracy, N. (2010, September 20). Reasons for Bipolar Medication Non-Compliance, HealthyPlace. Retrieved on 2020, February 23 from https://www.healthyplace.com/blogs/breakingbipolar/2010/09/medication-non-compliance
Author: Natasha Tracy
Yes i agree, it should be persons choice, if they acknowledge consequences, from not taking meds. But there should be a family member of THEIRS present. Also a spouse present, if married and possible with evidence, videos, recordings, diaries of their biopolar 1 mania/psychosis events. I love my wife dearly, its just me and her, with our beloved cat. So sometimes they quit taking her meds and it is not good for her definentaly, and it can cause issues with their (husband) me right now mentally, and i have a pychiatrist as a result of my wifes episodes and hes (great) by the way. Wish i could take her meds, for her or do something for her. Thanks,
I agree it's the right of the patient to be on medication or not. Perhaps you might take a moment to consider how your non-compliance affects those who love you...oddly, it's not always all about you.
I feel like crap on these drugs. Sure, I can be a public nuisance off the drugs, but at least, whilst off the drugs, I feel emotion and have energy. I feel suicidal, weak and tired all the time on these drugs. Psychiatrists should not be allowed to enforce treatment! Glad I chose not to have children!
I agree with Anne. I just found out my son has stopped his meds. I think it is an individual's choice of course but should be done with care. I am hoping his therapist will talk to him to evaluate him. I can tell he's losing weight which I think is the reason he stopped. I do not blame anyone that stops the meds if they can function off them without any major problems. I hope and pray he does not try suicide again, for I am afraid he will succeed one of these days if he does.
I was diagnosed with Bipolar and I got off my medication. I experienced side effects but for the most part, I am completely fine and able to manage myself better without medications. Sure life is hard, but my doctor would never have helped anyway? Plus I was more likelier to end up in a mental hospital while on medication.
as the mother of a bipolar person who consistently stops taking her meds and ends up suicidal and hospitalized, I would ask that before we all jump on the "you don't need meds" bandwagon, we state that every single person is different, every single person has their own regimen to follow and their own DNA, their own reactions, interactions, etc. and to consult SOMEONE before stopping.
she is currently hospitalized. it could be short term, it could be long term, but for her the one thing that makes life consistent and safe for her and her children, are medications and therapy.
What the heck is wrong with wanting control over the situation. It is the person's life your dealing with here, and they have the right to choose if they want medication or not. Some people really don't need it.
I also agree wholeheartedly with Richard and TJ.'s comments
While I fully understand family and friends anger & frustration the fact is they are not the ones taking these meds. It would be nice once in a while if they could just try to see things from our point of view. As Natasha has mentioned above there are a lot of reasons for non-compliance. Just because we are drugged doesn't necessarily mean we are better... No one wants to be sick or miserable. And not to sound selfish but it can be soooo frustrating and irritating when family blindly and unquestionably support a doctors decision no matter how detrimental that decision is to our overall health, (mind body and spirt)
Finding another pdoc is not as easy at it sounds. They're usually in short supply, especially if you live in a rural area. I've found the really good ones often aren't taking any new patients.
I agree with Sue that medication is helpful in a crisis situation but I am beginning to realize that this may not be the case over the long haul. When I retire in 3 years I'm going to try to ween myself off them. I'm on such low doses anyway. I would try it now but I don't want to risk ending up in hospital again and maybe lose my job this time. Once I have a retirement income and my life is less stressful Ill feel safer to experiment a bit. I often feel like the side effects definately out weigh the benefits, but I don't complain too much to my doctor because I don't want to have to increase my medication or chance switching to a worse one. To those that know me, they believe the medication is the answer to all my/their problems but they'd be wrong. On the outside everything looks fine but on the inside I'm not exactly tiptoeing through the tulips with joy on these medications. Lets face it, doctors are in bed with the pharmaceutical companies, they keep each other in business. In the meantime I am going to try to try to live a healthy lifestyle and read my self help books for new ideas. Unfortunately working with a counselor is not a option for me at this time so I also go through self help workbooks that are useful
The reason I have stopped taking my medications in the past was the psychiatrist seemed to feel that if one drug didn't work, let's just switch to another! I was put on Depakote for my bipolar 1 and got a rash all over my body and was then placed on Lomictal. Although it did calm my symptoms it also numbs my feelings. The doctor added Seroquel which caused me to gain 40 pounds in two months. Psychotropic drugs do help in a crisis but I think there are better paths for long term management of my illness.
One of the things I hate to hear from friends and family is that the "Yay! I'm better reason" seems to be the only one they are aware of, and are therefore cruel and judgmental about anyone wishing NOT to be medicated. Those that know that I'm bipolar often regale me with lovely tales of someone they know who went off their medication... and catastrophe ensued. When this person resumed medication all was bright and happy again.
The problem is they are NOT me. They are not even the ones suffering from the same disease!
I am sorely tired of the dry mouth & eyes, the aching, the blurred vision, the tremors, the fatigue, the muddled thoughts, the dimmed feelings - justing being "blah". I desperately wish for a vacation from these effects and am now weighing them against my suicidal episodes. Right now being suicidal is looking better than all these stupid side-effects.
Yes. That's how much I hate these side-effects. I wonder, too, if it's an indication that I am not as stable on these drugs as I should be.
I personally gained 50 pounds on seroquel causing me to stop it without a doctors supervision. I taped myself down from 300 to 150 to 100 to 50 mg. So I was smart about it. I just gained so much weight I was done. My pdoc found out through my parents and ended up doubling my dose of latuda which I can barely hold down so I've speed taking that. Another side effect that's not worth it. I barely eat and lost 16 lbs in a week Thanks to my new bulemic diet and is starting to cause anorexia as well from me not wanting to touch good at all. Not worth gaining an eating disorder personally. So I know what you mean.
These articles gloss over that the brain is still mysterious. Contrary to pharmaceutical advertising, there isn't evidence that their drugs impact serotonin. For this reason, such advertising assertions are banning in Canada and Great Britain. Most US advertisements have changed to only imply this cause and effect of their drugs.
It seems that medications used have a "shotgun effect" that is much different than patients seem to be led to believe. Probably, this is why these drugs have so many intolerable side effects.
The paradox is that some drugs used for the treatment of this disorder are used to treat Parkinson's Disease; when taken for a length of time or at high doses, the drug causes the symptoms of the Parkinson's disease: these are called pseudo-Parkinson's symptoms.
I'd like to hear from the patients with Parkinson's-like symptoms: is the treatment worse than the disease (bipolar disorder)?
Having read elsewhere that the side effects of a bipolar medication regimen include rapid weight gain of between 40 and 60 pounds, how is your exercise and diet plan working out these days?
Are you finding it hard to walk for 30 minutes daily doing the Haldol-shuffle? Does sleeping 12 to 14 hours daily interfere with your exercise plan? Is your increasing appetite due to your "greens and beans" bipolar diet? By the way, how does that diet effect your quality of life? Do you still require assistance to tie your shoes?
[...] And that’s the thing. I understand the consuming desire to excise the poison of psych meds from one’s body, but doing so can be just plain dangerous and life-threatening. All sorts of nasty things happen to people when they suddenly stop their medication. This is known as medication non-compliance and is a topic I wrote about at Breaking Bipolar. [...]
You make an excellent point that sometimes stopping meds is a way of punishing ourselves and that's a behaviour we have to look at and deal with in order to be successful.
And, for the record, your ways of thinking are not screwed, just not helpful and something to be addressed. But knowing that is the first step to addressing them and moving forward. Which is great for you.
I've been on antidepressants for about 15 years. In the early years, I was non compliant because of lack of understanding; these days, I occasionally (but rarely) go through phases of stopping my meds - generally because I feel I deserve punishment and by stopping my meds I know I am harming myself. I've lied to my psych and my Dr about what meds I am taking as a way to punish myself for how I feel/the person that I am. I know that what I am doing isn't helping my situation, but I acknowledge that it demonstrates, even to myself, my screwed thinking and ways of dealing with things.
I took meds for 20 years. I lost my memory, I lost my ability for critical thinking, I lost my ability to read or do my crocheting, I lost my sex drive, I lost my hair, I lost my ability to relate emotionally to the ones I love. However, there were gains: I gained 35 pounds, I gained the ability to sleep and sleep and sleep my life away, and I gained a pre-cancerous tumor on my liver and severe arthritis directly caused by the meds. It took 3 years to gently, patiently wean myself off all meds. Since I took my last pill April of 2011, I have lost 14 pounds without even trying, enjoyed a love life with my husband for the first time in 5 years, resumed my crocheting and started my own business, patched up some family relationships, and have branched out socially. I am so sick of hearing about medication compliance. There are other ways to maintain one's mental health. I faithfully go to therapy, see my pdoc, and work www.recovery-inc.org. Nuff said.
I agree with Richard too, if the doctor isn't willing to work with you on addressing your concerns, then it's time to get a new doctor.
I'm sorry you've had such a rough time with doctors, all I can say is that if a doctor isn't working for you, I would suggest getting a referral to another. Go to your GP and ask for a recommendation. Go and research doctors online.
It is not fair to suggest all doctors don't care about the wellbeing of their patients. Many do. Mine do. Many others do. There are certainly bad doctors out there, I have ranted against them plenty. But they aren't the only people that exist.
I agree with Richard. My doctor never listened to a single side effect in 8 years and lied to me constantly. My life and body are a shambles. My new doctor is extremely aggressive and even offensive. I don't need my former iq of 130 ( now about 40 on lithium) to know the guy ain't gonna give me permission for nada. Why should I show respect for them when they have disrespected me so much. It's not a level playing field. I was honest and compliant for 8 years and I was basically a fun experiment for a dopey dr. I wish I had listened to my instinct instead of the dr and my family. Listen to your gut if you want to survive psychiatry. It's not even about the bipolar for me anymore. It's a constant battle to minimize meds and try to survive. Their complete lack of concern for the physical and emotional consequences of their vast overmedication of all patients never fails to shock me.
The problem with your suggestion of talking to a doctor is the doctors don't always listen to the patient. There is an unfortunate view that the brain is mechanical in nature and everything is predictable. Because of the perceived incapability of the patient there is often less than total willingness to cooperate and where the patient and doctor disagree, generally speaking, the doctors tends to win.
I was on medications that I believed to be causing me serious harm. My muscles were wasting away. My vision became bad, my heart rate irregular, and I was even loosing the ability to perform bowel movements normally. This, in addition to a variety of side affects that were causing problems of mental instability made all the worse by constant pain. If I took doctor's advice I wouldn't have recovered.
I first went to the doctor. He refused. I waited until I was 18 and took myself off them. That was over 10 years ago. My vision has improved about 10% as the muscles around the eye grow back, though my vision hasn't completely recovered. I stopped having heart murmurs. I stopped having asthma attacks. I am able to have normal bowel movements. My muscles overall have toned. And I am a productive member of my community and I own my own 1880's 3 bedroom Victorian home. I am also getting ready to go back to college for my associates degree in biotechnology. I wouldn't have even had the mental focus for college if I was still on those drugs.
I agree you should go to your doctor first if you want to get off medications, but if the doctor doesn't cooperate, that doctor probably doesn't have your best interests in mind.
Seems like people aren't being encouraged to report serious side effects like the ones you described. There's a new iPhone App, 'MedWatcher,' to support Real-Time Drug Safety Surveillance with info from FDA, reviews and which allows both patients and clinicians to report adverse events: http://www.healthmap.org/medwatcher.
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