An inflammatory and unhelpful cartoon about side effects. Image: isiticism.com
Most of the time when I sit down to write, even if it’s about something difficult, my main aim is to be helpful.
Not today – today is piss and moan day.
I’ll start with the caveat of saying that medical science is wonderful; the meds we have available to work with today have been life-changing for many of us, overall in a good way.
That doesn’t change the fact that we have much yet to learn. The human body is less like a car and more like a cake. We can’t remove faulty brains and replace them, so we’re left with the option of altering the recipe and screwing with the ingredients.
Sometimes we don’t need to leave a cake out in the rain for something to go wrong. Much wailing and gnashing of teeth have occurred in this house when my husband has followed a cake recipe with measuring spoon precision only to have it go soggy in the middle or balloon into a shape resembling a radioactive birth defect.
Brains are far more complicated than cakes. Tweak one thing, and there’ll be an unintended result somewhere else – the wonderful world of side effects.
Fortunately, many side effects can be mitigated by changing to different meds or, if you’ve started something new, just waiting out the initial bedding-in period.
Nonetheless, here’s a collection of side effects that I sincerely hope science finds a way of eliminating in the next twenty years.
Retarded ejaculation
Yes, reduced sex drive and libido are also known side effects of some meds, but for sheer frustration and loss of humanity this one cannot be beat. And “beat” is an appropriate word to use here – as in literally beating a dead horse.
While it can be great for a partner, who gets to play for hours with a fleshy sex toy, the body it’s attached to may as well be joining Boy George for a cup of tea.
It’s like shagging with rainbows. You can see it on the horizon but the closer you get, the further it runs away.
Frequent urination
Someone is taking the piss. I know that’s an unintentional pun, but this one really irritated me.
I encountered it on fluoxetine, and it’s a side effect I’d never heard of. I hadn’t been on it very long, and one evening noticed that I was having to visit the boys room every half an hour.
After googling, I discovered I was not alone in this. For some people it goes away, for others it doesn’t. I’m surprised it hasn’t developed an off-label recreational use for watersports enthusiasts.
Pitch shifting
The most bizarre and disturbing side effect to date for me. I had been on Tegretol for about three days when I began to notice that music I was listening to sounded at least a semitone lower than normal.
At first I wrote it off as tiredness, but as the days went on, I noticed the effect was consistent and constant. No matter what the time of day, music no longer sounded the same. It had been pitch-shifted downwards.
Thinking this can’t possibly be a side effect, I nonetheless looked up Tegretol online and discovered the following:
The experience of perceiving sounds lower (about a semitone, or ‘half-step’) in pitch than they really are is a known side effect of this drug, however its rare for people to notice it, so the patient might be considered unusual in that.
I rung my psychiatrist and virtually had to plead to be taken off it (he was an arsehole, luckily I have someone who listens to me now). Within 24 hours, regular transmission was resumed and middle C sounded like middle C again.
Excessive sweating
Having to leave spray deodorant in strategic places like a perverse Easter Egg hunt is not how I imagined spending my time when I was diagnosed with bipolar. Nonetheless, buckets of sweat oozed out of me on one particular pill. To quote Edina Monsoon from Absolutely Fabulous, “I’m very bloody sorry about the ozone layer, but this is matter of human survival here!”
Sitting through work meetings in the middle of winter while Niagra Falls pours out of your head is a hard thing to hide, particularly when you’re trying to daintily dab it away with a handkerchief like a blue rinser recently exposed to graven images.
Morning fog
I’m not sure whether this one was even unintentional. Saying you’re going to fix someone’s anxiety by making them so groggy that their brain can’t spin fast enough to upset them falls firmly into the sledgehammer > nut category.
Yes, I have noted a significant drop in my levels of anxiety, doctor. I also can’t get out of bed before 10am without being loaded onto a handcart like a broken plasma TV destined for the landfill.
This effect was most pronounced for me with quetiapine, which has a huge dosage range depending on how strung out you are. On a relatively small dose, walls would melt for me. My psychiatrist told me another of his patients was on four times as much as me and could go and walk on rooves (he was a builder, not having manic episodes).
*
Okay, so here’s the trying-to-be-helpful bit: you don’t have to put up with any of this, or at least you may not have to.
There’s a reason why they’re called “side effects”. They’re supposed to be like the little plate you have next to you in a restaurant for putting bread on. Not the big one in the middle that gets its contents spilled all over you by a neurotic waitress.
If you’re new to medication, or are intimidated by what you’ve heard about side effects, try to take a wait and see approach and worry about them if and when they happen.
Drug companies are legally required to disclose any side effect a patient reports from taking one of their products, no matter how rare. This is why when you look up anything you’ve been prescribed you’ll find a laundry list of adverse reactions that can be very scary.
If any of the side effects you’re experiencing are more significant than the intended main effect of the drug you’re on, talk to your doctor. And if they don’t listen, change your doctor. There’s no side effect called ignorance.
I got on clozapine and aripiprizol and loraz now i am fatigued all the time and gained 40 pounds, when I walk it looks like I have a hunch back. All my muscles clinch and I have to have blood tests every week to measure the clozapine levels. Better than thinking I am a super hero who’s mission is to save woman from being raped I guess, its also better than thinking my blood is boiled and I am turning into stone and thinking that I am inadvertently responsible for 911 and walking around in constant grief and shame worried someone will learn my guilty secret.
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Great Blog.. Now following you on Twitter also! ( I seemed to have missed the 35 pending ‘follower’ requests on the tweet machine- relatively new to twitter but not to blogging – sorted now). I was prescribed Seroxat 15 years ago, 100% med free ten years and counting….( Aropax in New Zealand). Side effects on Seroxat were hell… and then some.. Great to see more and more people blogging about side effects from psychiatric drugs… discourse from patients is the way forward..
I have been on over 35 different combinations of medication to treat bipolar I with mixed states. I have experienced the gambit of side-effects: My hair came out in clumps, I gained 40 lbs, I lost 40 lbs, sever hand tremors, fainting, headaches, and more. If it is listed, I had them. One medication causes kidney failure in less than 2% of patients, well, I am in that less than 2%. Even with all of that, I kept trying because living off of the medication is far more debilitating for me than not. I was diagnosed 20 years ago. I found the right combo for me about 10 years ago. The biggest help to that, in my opinion, was finding a doctor who listened to me and respected the fact that I knew “my stuff.” It was my research that lead me to my current regimen. I highly recommend the medication-therapy route for anyone who is newly diagnosed. Medication can only do so much. We have to learn how to make this disease live with us and not interrupt our lives. My favorite pychiatrist said finding the right medication involves the “Four T Method: Try This. Try That.” It is frustrating, but worth it! Good luck to everyone coping. Don’t give up, there is an answer out there that fits your disease.
I had a ‘discussion’ with my psychiatrist a few weeks ago. She told me to get up in the morning and go for a walk! I said I can’t… Being on 600mg of Quetiapine there was pretty much nothing I could do all day. The morning fog stayed well into the afternoon, sometimes early evenings. When I told her this she would not believe me, and basically told me to stop being lazy! Sometimes I only had 3-4 hours in the evening where I felt like myself, before lulling myself into another coma by taking my nightly dose of Quetiapine. I went against her advice and started reducing my dosage. Im now taking 300mg, and I can actually get up at a reasonable time in the morning, and get something done.
I figured I had to start making my own decisions about what, and how much medication goes into my body. The only thing worse than feeling too much is feeling nothing at all!
The ladies can run into “retarded ejaculation” problems as well – sertraline seems to do that to me, but it’s worth the tradeoff to head off depression. Frustrating isn’t the beginning of it.
I think the worst side effect that I get is aphasia. I blame that one on the lamotrigine, but it’s a miracle drug for me. It actually chased off the pre-existing morning fog. The aphasia comes and goes, but is worst when I’m already anxious and in conversation rather than writing, which is naturally when it causes the most anxiety.
The best side effect I’ve had is appetite suppression. I’m on 4 drugs for which loss of appetite is a potential side effect, and it was #4 that proved the tipping point. For someone who really needs to lose weight, it’s a godsend.
I have a whole list of side effects from my meds (and several blog posts on the topic) but even put together, they’re far better than the common side effects for other drugs for the same brain cooties.
After finally getting back to a pyschiatrist, after a bad experience. I have been relieved to find some modern low side effect meds. My favourite recent mood stabiliser is “lamotrigine” an anti epileptic which acts as a mild antidepressant, as well as antimania. The down side is that the dose can only be started at and increased by 25mg a fortnight to avoid a potentially life threatening rash. Other than that there seem to be no side effects i have experienced- except for a few days after dose increase including headache, slight eye twitch/tic, and spaced feeling, all of which subsides. It does not seem to effect male hormones, brings erection strength and ejaculation back to normal pre ssri/snri days! So far no weight gain or other usual pysch med issues with it either. I am now up to 200mg, and will prob go a bit higher.
My depressive falls can be somewhat severe so i have just started “agomelatine” to try as an anti depressant to add in with lamotrigine, no side effects to speak of, gives good sleep at night normalising sleep patterns, but the AD effect seems very low- will see how it goes over the next month.
Note neither of these drugs are subsidised on the pharmaceutical benefits scheme in Australia for bipolar 2. So can be expensive. But both are approved as safe to use here.
Previously taken soduim valproate, venlafaxine, zoloft, prozac, cipramil, and had the full circus of side effects, prior to the above meds.
Loved the blog ; 2 points 1. after years of being on lithium combo with depakote my moods irratic again ,and experiencing a tinitus effect (swooshing sounds/waves heating to radio tuning and music-faint but my old brain interprets it as music-I do not sleep very well very often-2-3 hours a night) GP pooh poohs any association. 2.Recently been put on Citralopram , and yes it can take a long time to see some outcome of all that effort , but before I was quick to finish and oozed …..now I’m reaching heights of my mid 20s ,so I suppose its not all bad.
I had terrible side effects on Mirtazapine and Venlafaxine. They both sent me into a weird state called akaithasia which made me unable to stop moving around and feeling agitated and terrified for weeks, resulting in hefty doses of Benzos and anti-psychotics to make me even sit still. Thankfully that’s rare. Paxil made my orgasms leave home for weeks on end without so much as a note goodbye. I also suffered a really hideous withdrawal syndrome. Thankfully the current drug (Citalopram) just makes a little bit more sweaty but the orgasms came home (and were welcomed back). The vivid dreams and frequent night time waking are bearable.
In spite of all that, I’m still grateful the drugs exist and without them I suspect I’d still be in the hideous mess I was in before. Bring on newer and better drugs though.
“Paxil made my orgasms leave home for weeks on end without so much as a note goodbye.” << best description of retarded ejaculation EVER
As Joe said, written with your usual ascerbic wit and humour, Chris – a very serious topic written with a delightfully sardonic twist. However, I just feel driven to comment on the psychiatrist vs. GP debate.
As a mental health clinician who’s been in the ‘game’ for over 3 decades, I think it’s very important to point out that, as with ALL people who are trained in a particular skill, there are good GP’s and there are good psychiatrists and there are the others. As far as GP’s and psychiatrists are concerned, I believe you should treat them no different to hairdressers and/or dentists (or mechanics or plumbers or ANY people to whom a fee is paid for a service). If you went to any of these service providers and didn’t like the job they did for you, you’d vote with your feet and go somewhere else. If you’re paying for a service, you have EVERY RIGHT to get the best service. If you don’t believe you are, go somewhere else! GP’s and psychiatrists are no different. It may be useful to voice your concerns to the GP or the psychiatrist but my experience is that it probably wouldn’t make any different. For many decades doctors have been trained to think, at some level, that they can do no wrong. It IS changing but only very sorry. I mean, what can we possibly make of a profession that teaches it’s novice practitioners that you MUST NOT use the words “I’m sorry” in case the patient takes it as an admission of liability??? Come to think of it, ever heard a doctor or a health specialist say, “I’m sorry we got that wrong”? But trust me, on the inside of the health system, we know it happens, and more often than most of us (lay people or otherwise) would like to think.
Don’t tolerate bullshit from any health professional. Ever. YOU know what is best for you and even in your physically or psychologically compromised state, you have a right to be able to express your opinion and have it acknowledged and respected.
If you’re in the public mental health system, there are meant to be safe guards to avoid patients being mistreated by their health professionals. Second opinions, nurse advocacy, and that these services are provided by teams – rather than individuals are all strategies that are implemented to ensure that patient advocacy is at the forefront of everyone’s care delivery.
There are ombudsmen, mental health review boards and so on – and in Australia (Victorica) we have the Office of the Chief Psychiatrist (OCP) which is again one of the strategies implemented to ensure patient safety is paramount.
In short, as I said before – you do NOT have to put up with bullshit mental health care – but, sadly, it does involve fighting a ‘system’ that tends to close ranks. And I can appreciate that not everyone has the energy, savvy or funds to be able to do this. I just want to repeat that, if your GP or your psychiatrist is NOT giving you good service – do whatever you can to change!
For whatever medical reason, some practitioners can be insensitive about the effects (unpleasant or otherwise), preferring to believe (medicine can be a faith) what the drug representative has told them at the conference/dinner party; sometimes even when it’s written as a ‘side effect’ in the leaflet that comes with it. From I hear from other people on some anti-depressives for example, puts at least the male sexual problems at far greater than the 2% or so of men affected that is written on the pamphlet.
Also, there’s interactions with other medication, herbs and maybe even food (which may not be listed because of a persons unique individual metabolism, genetics and so on.), and then medications for other medical reasons that give psycho-active or exacerbate existing conditions. I was on an antiviral for several months with a listed side-effect of ‘vivid dreams’, which didn’t sound that bad at all. I could take them in the evening (as recommended) and could go out ‘off my face’….at first. Then when other ‘issues’ arose and I started having possibly psychotic strange thoughts, I was told to just see a psychiatrist. I had to just discontinue taking them, so I could look after my mother who was dying with a brain tumor. (My mother was given a referral to psychiatrist too, instead of a diagnosis of the tumour she had.)
The point, I would like to make here is, it can be difficult for many medical people to appreciate or understand conditions they’ve not experienced themselves, and the need for a ‘central’ doctor who is aware of all the parameters involved or affecting the patient. I believe the average GP should not be prescribing psycho-active drugs and that there has to be constant monitoring of what’s going on. The antiviral I was on is now known to cause serious mental changes from hallucinations to inappropriate laughing. (I met one guy who thought the fridge was talking to him and another I saw laughing when someone was telling him how he lost his leg.) In many cases one must hear directly from others who have been affected tin these ways to know these side-effects or possibilities exist. Currently, I’m experiencing the legacy of the situation exacerbating a chronic fatigue/narcolepsy situation and even more so lately when the hospital pharmacy run out of 100mg tablets and gave me 200mg tablets without telling me orally or in person, and now I experience some peripheral neuropathy as well.
Ciao for now (my head-ache is getting worse and I have to go to sleep)
I don’t know if I’d agree about GPs not being able to prescribe this stuff, the best healthcare I’ve had to date has been from my GP and the worst from psychiatrists.
In my experience, Chris – a GP who actually has an interest in psychiatry will pursue and enhance their own skill level voluntarily – which is always a good thing. But typically they are the exception rather than the rule. Psychiatrists are specialists and as with most specialists, tend to end up (arrogantly) thinking their’s is the only voice that needs to be heared.
There are increasing numbers of psychiatrists who are willing to actually listen – but don’t ever lose sight of the fact that ALL medical practitioners are taught their trade by focussing on symptoms (i.e. what’s wrong) and removing those symptoms. They are NOT taught to focus on the individual’s strengths and ways of coping when they are coping well… And REMOVAL of those symptoms is their measure of success. Irrespective of what the patient tells them. Thankfully, times they are a changing (albeit VERY slowly)…
Everyone can only speak from their own experience. I’ve experienced quite a few GPs, specialists, hospital admissions, surgery, psychiatrists and so on, mostly in Brisbane, Queensland or thereabouts. Some GPs and psychiatrists that I’ve seen have been quite ‘wacky’ from downloading information on chemical castration for paraphernalia and being quite forceful in insisting I have a digital rectal examination and thinking it was OK from her because I’m gay and would be used to it. (Funny, it’s always women who give me these examinations, the male GP drew a picture of an anus and I had to indicate where the problem was!)
The female doctor went out of her way to prescribe expensive FSH (follicle stimulating hormones used for infertility) because the testosterone was shrinking my balls! She also prescribed an antidepressant (Aurorix, I think) which got me a little speedy and when I told her that she halved the dose because I wasn’t meant to enjoy it, which brought me back to feeling depressed. The psychiatrist in the same town, a friend (A psych nurse) had recommended, saying, “He will warm to you.”, called me a sexual pervert and got upset maybe because my penis was bigger than his. Instead of being understanding he was always challenging me and pushed me into psychotic thinking were he was a threat and I kept thinking of how I could get rid of him.(He was threatening to inform the wacky female doctor.) I went back to sanity after I decided to not see them or take the aurorix. The only reason I went to him was for a professional to be able to monitor the aurorix, but the psychiatrist was not interested in how I felt at all, but obsessed with my sexual experience.
I have seen other psychiatrists AND psychologists who seem to be there for their own problems. One psychologist wanted me to hear her taped voice which only made my anxiety worse (again it was all about her needs, but I took her tape back and told her it wasn’t helpful. She was removed from or left her position, not that long afterwards.) One gay one (a closet gay, head of psychiatry at a large hospital was very nice, but couldn’t see me anymore, when I told him I was interested in him. I (manicly?) had told the reception that I didn’t find him a good psychiatrist, but I’d rather go home with him. One GP said that He thought I was close to enlightenment and might be the first man to bear a child!
I better leave it there. For years now I have a psychiatrist who is like a friend and very interested to all my facets. Medicare covers his costs. I have another one who I see for my prescription of dexamphetamine. Very few psychiatrists will prescribe it for anyone beyond a child with ADHD. (A friend’s wife’s son has ADHD; that’s how I found this one.) He prescribes it for narcolepsy/chronic fatigue- I virtually don’t wake without it, but has to get it approved under Adult Onset Attention Disorder, which is the case if one can’t wake up. The only other people who can prescribe it are Sleep Disorder Specialists (that’s another horror story) and lately my neurologist I’ve been seeing for years has offered it to me, saying that it is superior to Modafinil. In Queensland, medical staff appear to think that only speed addicts are after it, and heroin addicts are after the panadol forte for the codeine (A friend kept asking me for mine saying that 5 are like a heroin hit!). There are signs on some clinic walls saying the doctors will not prescribe panadeine forte (amongst the signs warning they will not tolerate violence from the patients.)
Thanks so much, Mr. Banks. What a very helpful post. And you are your usually hilarious self.
I have been on, in the last 4 years now;
!) Geodon (ziprasidone) which gave me a Parkinsonism/Restless Legs Things which is now controlled by another pill.
2) Abilify – which sent me into orbit
3) Zyprexa (olanzapine) – will not go there
4) Risperdal, which is good, but might make you grow breasts and lactate due to an increase in the hormone prolactin.
And about 5 other anti-psychotics, all the new generation atypicals.
Finally, my wonderful doc put me on Clozaril (clozapine) which is known here in the U.S. as the “last resort drug.” No extrapyramidal side effects, BUT you have to have your CBC blood work done weekly. Or else the pharmacy cannot dispense the medication. It can cause a rare blood disorder called agranulocytosis. But it is simply the best medication I have been on. I do sweat a lot and drool all over my pillow at night.
I have had trouble with urination before too. It is very aggravating.
I am surprised no one mentioned significant weight gain?
Thanks Joe
Lots of people have been talking about weight gain on the Facebook page. I have had some minimal weight gain issues, but can’t be sure whether that was the meds or the vast amounts of chocolate I was eating.
Amen brother. It may be a necessary evil to keep us going but dam I loose so much self esteem when I have to take one pill to keep me sane, another to get it up and work like the devil just to enjoy what my body should do naturally. Sex shouldn’t be something that I have to plan and prepare for emothionally and physically. It’s not fair. I may be a nutter but at least God could be kind enough to give me the ability of fundemental pleasures.
When I was Tegretol for my bipolar II, the drug always made me extremely tired, plus the Cymbalta for depression killed my libido. Am very thankful to be back on Lithium. I have a good Psychiatrist that listens to me and works with me.
With quetiapine, waking up with a “medication hangover”, also a dry mouth. With Venlafaxine, when it gets close to the time of the next dosage, i start getting withdrawl from it.
I’, HIV Medicated, and have found that with Nightly Medicinal Marijuana abates my night sweats. I do not recommend people become illegal, but after trying chinese herbs, etc, I have found that this herb works best at stopping night sweats. Although only 1 side effect, man it is frustrating, as one wakes with fears – night sweat = disease progressions. Speak always to your doctor, to alleviate any concerns. And never be afraid to try stuff, Chinese Herbs can offset many side effects, without damaging the functional ability. Peace to all, and Universal Love.
I don’t like to read about side-effects because I have a tendency to feel everything I read but a lot of what you describe rings true to me as well. The retarded ejaculation has even changed my sexual habits, it takes me a long time to come when I’m active, in the sense of penetrating, I come much faster when I’m passive, this may also due to getting older, because it excites more, but I believe there’s also an influence of the medication I take for the bipolar disease. The frequent urination thing I was not aware of but it’s happening to me a lot, more than it used to. It’s nice to know because we begin to wonder about other possible causes, but I think this is it. This thing about pitch is interesting, I’ve noticed something like this, but it’s not so clear as the other side-effects. Fortunately I don’t have the excessive sweating. This morning fog thing is crucial. Because it requires a lot of management of the routine to work around it. It’s nice to know I’m not alone. I don’t wish this to anybody but to know that other people are able to fight it, it gives me hope that I can endure that too. Cheers.
If you’re noticing changes in the way you’re urinating you should have your prostate checked, mate.
Boy they sound annoying, I had some great ones after being on Effexor for a couple of weeks (I am now weaning off it with more great side effects) One was a head twich which made me look like I was ‘sup bro-ing all the time (I’m a white middle aged chick, so not cool), it also caused random twitchs every where else. On top of that is caused swelling to some membranes which made me feel really really really uncomfortable and want to have sex all the freaking time with no satiety, no matter what, again not cool for a middle aged mum of three! (I had to laugh tho after years and years of no sex drive, thanks fluox). I have just been perscribed a new drug which the major side effect is weight gain, as this it triggering for me I have decided not to take it and find something new………I hope it has a weight loss side effect *sigh*
Excessive sweating is the one that annoys me the most (dry mouth comes a close second).
I have a collection of towels for use on my pillows, changed every morning.
That said, I’m fairly stable on my meds, so the side effects are definitely the lesser of the two evils.