To help you navigate through the complex maze of side effects, how to figure out which ones you may get and what to do about any you may be suffering from now or in the future, I’ve separated them onto their own pages.I’m still working on some of these, so check back here
Loss of Libido
Lethargy, Daytime Sleepiness, Memory Loss & Brain Fog
Tremor, Shakes & Extrapyramidal Symptoms
Nausea, Vomiting, Diarrhea and other Gastrointestinal Issues
Blood Sugar Issues
Loss of Appetite & Weight Loss
Predicting Potential Side Effects
And now my rant about people’s general whining about side effects that either aren’t that bad or that go away after a couple of weeks.
Everyone is concerned about side effects. People stop taking meds because of side effects. People won’t even start taking certain meds, or any meds at all because of side effects. People pick and choose meds solely based on specific side effects that the meds have a reputation for. One of the most common phrases I read on the support group fora when it comes to medications is, “I’m very medication sensitive.”
Bill Hicks had a many great insightful routines, one of them went something like this, “To all you parents out there, let me tell you something, your children are not special. You may think they are, but they aren’t. Oh, to you the little rugrats are special, to the rest of the world they’re just another bunch of fucking kids.”
Hey, I’m a parent, I know what he said is true.
Guess what, the same damn thing applies to your side effects.
You may think that you’re especially sensitive to medications and that your side effects are a personal punishment from God Almighty for the shit that you did while you weren’t medicated. Or that the only way to deal with your illness is by eliminating the gluten from your diet and getting megadoses of trace minerals and amino acids.
That just is not the case.
Most everyone has to deal with similar crap.
We’re all med sensitive!
It doesn’t help that too many doctors start too many drugs at too high a dosage. And that some of those doctors compound that problem further by increasing the dosages too quickly. Doctors, patients and HMO / insurance company accountants expect instant gratification. Things just don’t work that way. The most complex organ in your body needs time to heal from traumatic injuries, and drugs alone aren’t the answer.
Here’s the deal:
Side effects go away.
Or they get to the point where they aren’t so bad.
Or you learn how to deal with them.
Sometimes they go away in just a few days.
Sometimes it takes weeks.
Sometimes it’ll take a year or more.
Sometimes they never go away.
Your mileage may vary.
Sometimes they come back or get worse when you increase the dosage of a med, sometimes not. Sometimes they even get better or go away when you increase the dosage.
It’s always a crapshoot with side effects. Or, in gamer terms, a matter of making that saving throw.
I’m not going to lie to you. I’m not going to withhold information from you. I think you can handle the truth.
Most of the time side effects usually go away or abate to the point of being bearable.
But when you live in the world of mental illness the question is always, which sucks less? Honestly, which? sucks? less?
Unless you’re having an allergic reaction or indications of something severely detrimental to your health, e.g. Stevens-Johnson Syndrome, aplastic anemia, heart palpitations, hypoglycemia, seizures, manic reactions, serious stuff like that, put up with the damned side effects for a few weeks!
These are powerful, alien substances that your stomach, liver, kidneys and brain have probably never encountered before. They don’t know what the hell to do when confronted with these crazy meds! Not at first. Do you know everything you need to know about what to do and whom to see on the first day at a new job? Of course not! It’s the same thing. Just as you need to adjust to a new environment and new skills, your body needs to adjust to these new substances. Your liver needs to learn how to properly metabolize them, your kidneys need to learn how to get rid of the leftovers correctly, and your brain needs to know how to follow its new set of instructions based upon an entirely new set of chemical signals. Your brain has been doing things the messed-up way for months, if not years, and is rather used to doing things the messed-up way, now it has to suddenly do things the not-quite-as-messed-up way, or maybe even the completely-not-messed-up way. That’s confusing as hell for your brain. Of course you’re going to have a headache or weird tingling or hear music where there is no music playing.
Don’t expect things to be right overnight. Don’t demand instant gratification. What are you, American or something?
Did you know how to do everything on that new job the first day? Or in any new situation in which you found yourself.
I thought not.
You probably made a few mistakes, you probably caused a few side effects of your own. Something got misfiled, misused, misplaced; someone got insulted somehow. Something broke.
How would you feel if you were discarded immediately because of the side effects you caused?
I realize that it doesn’t work out every time. People get fired because they really suck at the job. Meds get fired because the side effects really are too much and the desired effects really are too little. But you must give the meds a chance to work! Don’t go dropping it after a couple days just because you wake up with a headache and puke a few times. Check the PI sheets, call your pharmacist and see if Pepto-Bismal or Mylanta or a similar product is OK to take with that med.
Jesus, people, if everyone were like that the overpopulation problem would be fixed real fast. We’d have a global population of a few hundred million, tops.
One of the meds I take is Topamax (topiramate). One of the side effects listed, not just in the adverse effects chart but in the warnings section of the PI sheet, is kidney stones. Despite drinking 2-3 liters of water a day I still get a very minor kidney stone every few months.
You can uncurl yourself, as far as kidney stones go, they aren’t that bad.
I made the decision as to what sucks less, a couple kidney stones a year, or the really bad craziness I was experiencing in 2001-2002. Believe me the kidney stones suck way less. Oh, and it keeps the seizures in check. As I found out if I kept having seizures the chances of my dropping dead from a weird-ass seizure would be higher than the 17% they are now.
Puts things in perspective, doesn’t it?
I know, there are other anticonvulsants besides Topamax (topiramate), but you have to factor in my epilepsy. It’s not just bipolar here. Maybe I could switch to Trileptal (oxcarbazepine), but everything else has settled down and is working. I’m not going to mess with success. Oh, wait, I tried Trileptal. It quickly went from being my new favorite med to making things worse.
So try to put those ten or fifteen pounds that some med made you gain into perspective when you consider quitting or switching to something that may not work as well.
Which sucks less, mental health, or fitting into some clothes that are about to go out of style anyway?
When it comes to side effects I’ll discuss the most common and/or most notable. By “common” I mean happening to at least 10% of the people who take the med, based on data that are a factor of the most likely side effects reported in the clinical trials (frequently, but not always published in the PDR / PI sheets, sometimes I just find them on my own) combined with those reported by people on Remedy Find, the experiences Mouse and I and our friends have gone through, and those of people in other support groups (sorry about not naming them, but there are privacy issues involved). I’ll also factor in the take on side effects from Dr. Diamond’s Instant Psychopharmacology, Dr. Drummond’s The Complete Guide to Psychiatric Drugs , Preston et al.’s Consumer’s Guide To Psychiatric Drugs. I’ll also cherry pick from other books listed in the bibliography. Are my data 100% accurate? Hardly. But neither are the data of the clinical trials. Not everyone who takes a particular med is going to get these effects, but I feel that I’ve got a good reading of what is typical of a med. This is what you can expect. It’s not a guarantee it will happen, so don’t bet the rent money on it, but these are fairly likely, so you could be some spare folding money on their happening to you.
A lot of HMOs do not hand out the real patient information sheets with their prescriptions, rather they dispense cheap knock-offs that offer very little in the way of real information about the drug you are taking. Of course that’s one reason why you’re paying so little for your meds with an HMO. You can try asking for a real PI sheet, I don’t know if they are obliged to give you one or not, or you can ask your non-HMO pharmacist for such a sheet prior to evaluating a particular medication, or go to a good university library and look it up in a real PDR. You know the real patient information sheets when you see them: they’re printed in tiny type on thin white paper, they have adverse effects tables and the mystic glyphs of the chemical structural formulae of the drugs, along with the name, address and trademark of the manufacturer. When possible I’ve provided whatever versions of the PI sheets that I could find.
When you look up a med on some random website you either get a pitiful subset of potential side effects, or you get every potential side effect listed as if they have an equal chance of happening, from the rarest and most terminal to the most common and transitory. In my overview of each med I’m just giving you a really pitiful subset of potential side effects. If I can find the PI sheet online you’ll get the real skinny, usually in annoying PDF format. A good place to look up PI information in easy-to-read HTML instead of annoying PDF like the drug companies and FDA use, with a link to a medical dictionary to define medical terms, just in case you need to know what ptosis is1, is RxList. I’ve also included an Online Medical Dictionary and an Online Medical Encyclopedia, thanks to the Nation Institutes of Health, so you can look up terms you don’t understand. Here are your tax dollars at work, people! Put them to good use!
When figuring out the odds, the adverse reactions table is just a rough guide based on clinical trials. A lot of those side effects become more common, and a lot of them become less common. Then you get down to the stuff that is listed but fell off the table because they weren’t all that common during the trials. Frequent side effects that happened to between 1% and 2% of patients in the trials can often become common side effects in the real world. But infrequent effects (between 0.1% and 1%) and rare (fewer than 0.1%) effects are usually going to remain infrequent and rare events. They can still happen, the odds are just against it. I’ve included a couple of the freakier rare side effects for each drug that I got a kick out of them, just because I’m a sick puppy and figure a little gallows humor is good for everybody. The odds, after all, are at least 1,000 to 1 of those particular side effects happening to you if you take those drugs. There’s more about that in the section on how to read the PI sheets.
Every day I get at least one e-mail about someone’s thousand-to-one side effect. Well, if you just do the math it’s not that surprising. I’m getting between nine and fifteen thousand visitors a day to some random page on this site. Just by playing the numbers every day one reader will have had a med’s rare side effect over the course of their adventures in mental health. I figure everybody is due for at least one or two of the freaky rare side effects. It goes along with being “medication sensitive.”
The PDR and the patient information sheets are also the shit when it comes to drug-drug interactions. You’d think your doctor and pharmacist would be on top of these things. If you’re lucky they are. You’re not always lucky. For instance, the Lamictal (lamotrigine) & Trileptal (oxcarbazepine) cocktail is becoming popular for bipolar patients presenting symptoms of severe depression and rapid cycling. This cocktail makes a lot of sense for those symptoms, but you have to allow for taking Lamictal (lamotrigine) to its maximum dose of 400 mg a day because when combined with Trileptal (oxcarbazepine) it is only half as effective. There’s a special section in Lamictal’s entry in the PDR about its especially wacky drug-drug interaction with other anticonvulsants. Yet some doctors aren’t bothering to look this up and try to stick with the usual 200 mg a day of Lamictal (lamotrigine) to control mood swings. Hello! Did you buy that thick book just to impress patients? Mouse has seen 15 psychiatrists to date in her bipolar career and only four of them ever looked up any med in the PDR or similar book for adverse effects or drug-drug interactions or anything like that. The thing is, the drug-drug interactions are always listed by generic name, not trade name, so you may have to look things up to know just what the hell something is. Or just check out https://www.aidsmeds.com/cmm/DrugsNewContent.asp where you can enter all your meds and they’ll tell you if there are any drug-drug or drug-food interactions.
If it looks like you’re going be in for the long haul and have to ride a lot of horsies on the med-go-round, just invest in a copy of the PDR. You can find them in used bookstores in university towns for around $10, or on eBay for $30-$40. Yeah, those are ones that are a couple years out of date, but they’ll cover 80% of the meds you’re going to encounter. A lot of doctors don’t like the idea of patients with PDRs, but once you learn how to read the PI sheets, you can find that having one is both useful and, in a way, comforting. Knowledge is power, people, and the more power you have over your mental illness, the better.
What it’s ultimately going to come down to with side effects is what is going to suck less, the potential side effect or the illness you’re going to treat. The initial answer is always the devil you know in the form of the illness you have. The potential side effects are frightening as hell. That’s why you need to see the real PDR or patient information sheet to get an idea about the odds. Or at least read my crappy little section on each of the meds. Keep in mind, not everyone gets side effects, and many side effects are transitory. Others can suck royally and really can be life altering. The only way you’re going to know about what a drug is like is to try it. Honestly, it is a gamble. In gamer terms you have to make a saving throw with every drug you try. You roll the dice and hope for the best. The odds are generally in your favor with most drugs. I’ll do my best to try to let you know when they’re not in your favor, or not worth the risk.
But look at those odds and think about how ill you are now. Take into account the odds of your illness killing you.
Lifetime chance of death by suicide:
|Mixed Drug Abuse||14.70%|
From the article where I got the above statistics, Reducing suicide risk
in psychiatric disorders:
In a review of 22 studies—some including patients with bipolar or recurrent unipolar major depression—risk of death by suicide was reduced at least 5-fold, based on an informal comparison of pooled rates in treated versus untreated samples. Based on quantitative meta-analysis, the pooled risk of death by suicide was reduced nearly 9-fold (or by 89%) in patients who received lithium maintenance treatment compared with those who did not. The risk for suicide attempts fell nearly 10-fold in a compilation of 33 studies (Table 2).
For schizophrenia and other primary psychotic disorders, little research exists to indicate that atypical antipsychotics reduce suicide risk. Evidence is emerging, however, that clozapine may offer this benefit, in addition to its well-substantiated clinical superiority in treatment-resistant psychotic illness.
Another study associated olanzapine with a 2.3-fold lower risk of suicidal behavior, compared with haloperidol.
In Depressionland things aren’t as cheerful.
antidepressants of various kinds may tend to reduce the risk of suicidal behavior, but any such effect is small and statistically nonsignificant (Baldessarini et al, 2003, unpublished)
tricyclic antidepressants may yield lower rates of suicidal behavior than selective serotonin reuptake inhibitors (SSRIs). Similarly, however, such trends reflect highly variable research methods and inconsistent findings and do not hold up to quantitative analysis (Baldessarini et al, 2003, unpublished).
Some of the above disorders kill in other ways. In addition to the higher suicide rate, epileptics in general have a higher mortality rate. Treating the seizures reduces the risk of death in all of its various forms. And, as it turns out, taking the meds DOES NOT increase the risk of SUDEP or status epilepticus after all. So we’re a lot less likely to die if we just take our goddamn meds.
Death or gaining ten pounds. You make the call.
It doesn’t matter what the problem is – major depressive disorder, bipolar disorder, epilepsy, schizophrenia, OCD, panic/anxiety, neuropathic pain – they all suck donkey dong and they can all potentially kill you.
If they are severe enough.
Let’s be clear on a few points:
Not all things that make us mentally interesting are fatal.
Not everyone who is crazy needs drugs.
Certain disorders almost always need drugs. Face it, if you’re bipolar and/or epileptic, meds are the first line of treatment. I tried going the non-med way and barely got out of it alive.
One of the many problems with the health care “system” in the US is everyone, the patients, doctors and insurers included, wants a quick fix.
But when it comes to the most complicated part of our bodies, the one thing that most defines who the hell we are, there is no quick fix.
Whether you need meds or not, if you’re mentally interesting (a.k.a. crazy, mentally ill, sick in the head, loony, nuts, cuckoo, etc.) you will need the following no matter what:
Coping tools and skills
A support group
A network of people to check in on you
A good, healthy diet
Now some tips to help you decide if meds are worth the risk of suicide and other side effects.
It’s really a very simple decision.
What sucks less, what you’re suffering through now, or all the potential side effects?
If meds are strictly optional, then you can try everything else first.
Let’s take depression as an example, because while I think while some people are avoiding meds who really need them, I really think that modern antidepressants are vastly over-prescribed in this country.
There are people taking them who don’t need them at all.
There are people taking them at dosages that are inappropriately high.
And some folks are taking far too potent meds (e.g. Paxil (paroxetine) or Zoloft (sertraline)) when a milder med would do (e.g. Prozac (fluoxetine)
In the PI Sheets for all modern antidepressants it states that when used to treat depression, they are specifically for Major Depressive Disorder. But what is it really like to be depressed as fuck? Here’s my take on it. Keep in mind that bipolar depression, with its mixed states, tends to be somewhat worse than vanilla, unipolar MDD, but mileage will always vary.
The thing is, you really have to be laying in bed, staring at the ceiling for days at a time in a world of endless pain for no good reason to be considering meds right off the bat.
Or if you have been laying in bed in a world of endless pain and have finally managed to overcome all the hurt and suffering to stumble across this shitty website – stop beating yourself up for nothing and realize that you do need meds! Your brain just doesn’t work quite to spec and needs some fine tuning. You’ll still need the therapy and everything else mentioned above, but you’re not less of a person for needing a little chemical help. No more so than a diabetic who needs insulin.
And if all that endless pain is going to be the death of you anyway, what have you got to lose?
One thing about stuff that happens to you, sometimes that sort of thing happens to people who don’t take meds. Sure, if something obvious and dramatic is starting right after you start a med, it’s probably a side effect. But people who don’t take meds get things like eczema and gain weight. It’s not always the fault of the medications. Not every ache and pain, additional pound, strange blemish, and extra clump of hair in your hairbrush is the fault of the meds. That’s known as “growing older.” It’s an unusually common condition amongst humans, one with which I’m somewhat familiar, but it really isn’t my specialty.
However, you can let your side effect paranoia run rampant in one way. If you suspect anything, any least little thing of being a side effect, write it down. Keep a journal just of side effects. If you suspect a particular medication, that’s fine, note that as well, but what you need to include is what the side effect is, when it started, what time of day it occurs (if appropriate), how bad it is, and if there has been anything you could do about it, such as over-the-counter remedies. Whenever you have an appointment with your doctor, you give your doctor a copy of the latest entries. You discuss only the most important ones, don’t waste time discussing everything, but you give your doctor your notes on everything. In most cases your doctor, or someone with whom your doctor works or can contact, will have a better idea of the cause of the various effects and what, if anything, needs to be done about them.
I keep mine online, my doctor can look up what’s happening with me anytime. Also anyone who is interested can see what the effects of my particular cocktail are and how long it took to overcome some of the side effects.
OK, now how do you deal with side effects? How do you counter the weight gain? How do you prevent the sexual dysfunctions, the loss of libido? Is it possible to stop the hair loss? What do you do to reverse the acne? How do I get rid of the lethargy and brain fog from mood stabilizers / anticonvulsants like Depakote (divalproex sodium) or Tegretol (carbamazepine)? What do you do about the tremor you get with lithium? How about the tremor from antipsychotics? Is there help for the Diabetes and other blood sugar problems caused by Zyprexa (olanzapine) and Seroquel (quetiapine)? Is there any way to keep from throwing up all the time? I mean, I’m just sick of constantly puking!
Have I spammed every search term yet? Hey, over half the traffic I get to this site comes from people finding it through search engines. Hello Googlers! Hope you were able to find us without too much difficulty.
Side effects are scary. In one respect people should be afraid of some side effects, because these potent meds shouldn’t be mass-marketed the way they are, especially to the doctors. I think that there are many people, adults, adolescents and children, who are taking medications needlessly.
Yet there are people out there who desperately need these very same medications and refuse to take them. Why?
Out of fear of side effects.
Because of the stigma of taking these meds on top of the stigma of being a nut job.
Because of some form of anosognosia where they either don’t recognize they’re ill or refuse to deal with their disorders in a reasonable way.
Or they’ll try a med and stop taking it after a day or two because of a side effect that sucks but is otherwise temporary.
Like everything with being crazy, there are no easy answers. A big part of how you deal with these problems will depend on which disorder you have. And if you have more than one, well, that will just complicate things as always.