pills in hand

With many conditions, medication is often part of the treatment process. 

There are risks and rewards to medications, but at times those risks feel huge, and the rewards feel distant and difficult to reach. 

So many medications are now being advertised on TV with a message of hope, followed by a seemingly unending list of things that may go wrong if you take the medication, including death!

I am not surprised that people get anxious about medications – I have at times, and Al has as well.  So let’s talk a bit about what side effects are, how they work, and what you can do to minimize your risks.

So what’s the story with side effects?

Everyone is different and unique.  Unfortunately, that includes our responses to medications, alcohol, and food.

These differences can be small or large, but the practical upshot is that there is no way to 100% guarantee that a medication will be an effective treatment for your condition, nor is there a guarantee you won’t have a negative response in some form to the medication.  There simply isn’t.

Medications interact with people’s body chemistry in different ways and medication approval is based on treatments being relatively successful with a reasonable percentage of the trial population.

Also, if you aren’t white, the medications likely did not take genetic differences based on race into account. 

Modern clinical trials tend to be double-blind(neither the doctors nor the patients know whether the patients are getting the medication or the placebo). 

My condition(Functional Neurological Disorder) is extremely responsive to the placebo effect.   

The main thing to understand is that while medications have been proven to have useful effects with a significant number of patients, that does not guarantee that you will be helped by it, nor does it guarantee that you won’t have negative reactions(side effects) to any medication your doctor prescribes.

Side effects are recorded in studies and are shared to patients as a list of things that happened to a percentage of the population who also took that medication.  What might be very helpful for one patient could cause another patient with the same condition to break out in hives, or have digestive problems, or turn yellow(yay jaundice)!

That’s what those listed side effects are about – warnings of relatively common side effects and very severe ones, even if they are less common.

Reading up on side effects

Once you have been prescribed a medication, it can be useful to read over the possible side effects(which should always be attached to your prescription when you pick it up) so you are aware of possible problems. 

However, I want to give you a warning: you sometimes may make yourself sick by reading about it!

People are very prone to suggestion, it’s part of how we enjoy the creative arts, and part of why the world brings us pleasure. 

This also means that we can, quite literally, think ourselves sick!

It’s surprisingly common for medical students to feel symptoms of the conditions they study.  This is because humans are very good at pattern recognition and at manifesting what we believe.

So many of us can fall for this power of suggestion that if you read up on possible side effects, your likelihood of having those effects is increased just because you know they could happen.  For people with anxiety-related conditions, this process is especially strong.

possible side effect statements are warnings of what could happen, not statements of what will

In some cases, therefore, it may be in your best interest to hold onto your side effect information, and only read it if something strange seems to be happening or you get concerned that you may be having a bad reaction. 

Alternatively, you may want a friend or family member to read over the information so that somebody in the household knows what side effects to keep an eye out for.

If you follow this route, use common sense and don’t give it to an overly anxious loved one! 

I understand side effects well enough that I am not too concerned about reading up on them for myself – and I often share the ones that I may not notice with Al. 

He always has me read over his possible side effects so I can keep an eye out and he doesn’t get himself too worried.

There is always a risk of an allergic reaction to medications as well – so common severe allergy symptoms(like hives) may require an ER visit and a rethinking of medications.

This is much more likely to happen to a person with a history of allergic reactions of course, but a person with minimal experience with medications in general may also be at risk.

Most conditions do have multiple potential treatments, so an allergic reaction or a severe negative reaction generally doesn’t mean you can’t be treated, just that you need to try a different family or type of medication.

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Psychiatric medication side effects

The first time going on psychiatric medication can be stressful, but when the medication is needed, it’s a risk worth taking. As a patient, you need to be vigilant about your symptoms, and about taking your doses consistently.

Psychiatric medication is designed to affect how you process thoughts and feelings.  This means that your ability to self-asses or make good decisions may be compromised, either by being unmedicated, or by being given inappropriate medications, or by building up a tolerance to your medications over time.

Some psychiatric medications may actually cause suicidal ideations.  This usually happens within days of taking the medication, and people whose brains are not fully mature(under around 25) are at higher risk for that reaction.

You may want to make certain you are regularly checking in with loved ones, and minimize the major life decisions you need to make if you are trying mental health medications for the first time, or doing a major medication adjustment.

antidepressants and other psychiatric medications can increase the risk of suicide in the short term.

Generally, people with long-term mental health issues are actually more likely to exhibit suicidal behavior during their early recovery period, when the medication is working, rather than when they are unmedicated – the medication may give them more energy or self-control before the mood management effects kick in.

Also, of course, if life situations are causing or increasing these feelings, it may feel easier to bow out than to solve the issues, especially in the short term.

These are things to be aware of, not things to panic about, and again if there is a negative effect from the medication, that needs to be brought to the doctor’s attention quickly(the more severe the reaction, the more important it is to communicate with the doctor and likely discontinue use of the medication).

It is especially important with many psychiatric medications to take the medication regularly, as often it is only effective when there is a consistent level of a particular chemical in your blood stream. 

It also can take up to a few weeks for the full positive effects of the medication to be felt, so as long as there are no negative effects immediately, give the treatment time.

Side Effects from long-term usage

There is also a risk of negative side effects in the long term for certain medications. In many cases, those medications will require regular testing for your protection, but they don’t always do so.  If you are likely to be on a medication for more than a few months, you likely want to do some research into what the long-term side effects might be.

Example: tardive dyskinesia

Tardive dyskinesia has also been referred to as ‘flycatchers syndrome’. It was a pretty common side effect of many of the older antipsychotics.  You know those scenes in movies, where somebody is committed, and there are people in the corner with their mouth open at a funny angle, or are drooling all over themselves?

That’s tardive dyskinesia. That image isn’t actually a symptom of the person’s mental issues, but is, in fact, a side effect of the medication they were taking.

While modern antipsychotics have a lower risk of developing tardive dyskinesia, the risk remains – I developed it after a psychiatrist put me on an antipsychotic for a few months, even though that was not the appropriate medication for my diagnoses.

This risk is definitely also there for medication for physical concerns.  Many medications can have long-term damaging effects on our livers, and occasionally other organs.

Some forms of birth control cause longer-term infertility or increase the risk of osteoporosis, for example.  To explore the connection between osteoporosis and birth control further, take a look here.

Often people can build up a tolerance over time to certain medications as well – this is especially problematic with long-term mental health conditions that require life-long medication(like schizophrenia or bipolar disorder- the medication may become less effective over time), or people who experience chronic pain often find that over time the same amount of the painkiller is less effective in treating the pain.

You will need to decide for yourself what risks are or aren’t worth taking, but to make an informed decision, you need to know what those risks are.

Example: Bisphosphonates and brittle bones

As I’ve shared, my partner Al has autoimmune pernicious anemia which caused a severe decrease in bone density. To treat the bone density issue, he’s now taking Fosamax, a bisophosphonate. This medication slows down the breakdown of bones, which helps rebuild bone density. Considering how very fragile his bones are right now, that’s an essential part of his healing.

However, studies have shown that there are also negative ramifications to long-term use of this medication. Our bodies are constantly changing and rebuilding themselves, and our bones are no different. By stopping the breakdown process, the good news is that we do regain bone density(the point of the medication). The bad news is that if the bones are prevented from breaking down for too long, they become more brittle and faults can accumulate, increasing the risk of breaks.

The solution? Don’t take the drug for too long.

This medication shouldn’t be taken for more than 3-5 years, and then the situation needs to be re-evaluated. There are specific types of damage that can occur, the most concerning being an Atypical Femoral Fracture, where a person’s femur(the thigh bone) breaks after ‘little to no trauma’. This translates into ‘it just broke’ even though nothing happens to cause it(no fall or other injury). The femur is typically the strongest bone in the body, so this is pretty severe and disturbing.

So, Al and I are aware of this risk, and as Al has been on the medication for over two years now, we’ll be discussing next steps with his doctors in another year or so.

Again, since we know about this side effect, it’s totally worth taking now. But as time passes, the risks may outweigh the rewards.

Drug interactions

Sometimes two different medication combine in bad ways -or one medication combines poorly with other things we put in our bodies – like food or alcohol.  Often your medication will have a warning label on it telling you to avoid mixing your medication with another substance.

Most of my antidepressants, for example, give warnings of possible negative effects if I drink alcohol. 

One of Al’s medications has a warning not to take with grapefruit! 

These interaction warnings are designed for your protection because sometimes these additions will lessen or increase the effects of your medication, or otherwise change how the medication is absorbed.

As an example, many medications have warnings about alcohol. 

One problem is that since alcohol is considered a system-depressant(slows things down), it will increase the effect of other depressants that are also slowing your system down. If your vital systems like your heart and lungs are slowed down too much, they may fail altogether(this is one of the dangers of many forms of overdose).

You need to know what you are taking, how much of it, and why!

In many cases, medications also increase the effects of the other substance so you can no longer predict your personal tolerance. 

Things that may make you drowsy or dizzy(many medications can have this effect) usually warn you not to use heavy machinery(like a car) until you know how tired or dizzy the medication makes you when you take it. 

Some people may fall asleep after taking the medication, and other people may not feel tired at all! 

There usually isn’t a way to reliably know what your reaction will be until after your body processes the medication.  Proceeding with caution is just the wisest course.

The other issue is that some types of medications will also have strange reactions with other medications. 

It’s possible that two unrelated medications may cancel one another out, or increase the effect another has in an unhealthy way.  Many of these interactions and problems are well-documented, though each new medication on the market has risks of troublesome interactions.

Protecting yourself

Okay, so there are a lot of risks out there with taking medications, trying new medications and so on.  So why are you doing it?

Oh yeah, to treat a serious problem that is deeply affecting your quality of life.

That’s a pretty good reason, right?  So, not taking medication is generally not a useful option.

Instead, you want to make sure that you are taking your medication responsibly and are minimizing your risk of a bad interaction.  How can you do that?

Plan ahead to reduce your risks!
  1. Bring a medication list with you to each doctor’s appointment.  This will let your doctor know what you are currently taking(include vitamins and over the counter treatments too) and help inform his or her treatment suggestions.  Some medications have multiple effects, and some interact extremely well or poorly.  Most doctors will ask you to bring a list to your first appointment for this purpose.  If your doctor prescribes medications without asking about other medications, I would view that as a red flag and an indicator that you need to see a different professional.
  2. You want to be sure that all of your medications are at the same pharmacy.  As I mentioned earlier there are a lot of potential drug interactions.  Part of what a pharmacy does is check your prescriptions, including if any of them don’t mix well with one another.  If your pills are all at the same place, the chances of an unexpected drug interaction are pretty low.  You can also go to drug interaction sites to double-check.
  3. Each time you are put on a new medication, carefully read the warnings it contains.  You also want to hold onto the side effects information – either to read it yourself or to have a loved one look over for your protection.  If reading the side effects is going to make you anxious, don’t do it immediately!  Just stay aware of your body and reach out as appropriate if something feels wrong.
  4. Make sure that you know your dosage and schedule.  Some medications are time-sensitive(best taken in the morning or evening), and others need to be taken at consistent times(to ensure a reasonably consistent supply in your body).  If you aren’t sure, double check your doctor’s instructions(either in your discharge notes or on your medication).  If for any reason you fear that the pharmacy is wrong, call your doctor’s office directly to confirm your medication and dosage.  Welbutrin, for example, is one of the few antidepressants that has a stimulating effect.  Taking Welbutrin at night can cause sleeping problems, so it should be taken in the morning or early afternoon. I feel fortunate that I can take all of my medications and vitamins while I have breakfast.
  5. Follow instructions and warnings – if medication is to be taken on an empty stomach, take it the suggested length of time before eating.  If it suggests you take it with food, that’s usually to minimize the risk of your stomach getting upset(many antibiotics cause upset stomachs), or increase the likelihood that your body will absorb it(your body absorbs nutrients better if they are moving more slowly through your digestive tract).  If it doesn’t mention food, be aware of how your body has reacted to food and medication in the past – if you tend to be sensitive, eat something!  If it has warnings about possible dizziness, drowsiness or confusion, make sure that you don’t need to drive(or other risky behavior) after taking it.
  6. Don’t change multiple medications at once.  You want to know how each medication changes affects you, so try to change only one thing at a time, and give yourself time to adjust.  See if the medication does make you feel better.  See if you have a bad reaction.  Once you feel confident you know how the one medication affects you, then try the next adjustment.  If you add or change two treatments at once, how can you know which helped?
  7. Try to keep the number of medications you take reasonably low – if you have a single diagnosis, it’s likely that a single medication will help.  Having multiple conditions you are trying to manage may mean multiple prescriptions, but may not.  Each medication you take increases your risk of an unexpected reaction, a drug interaction issue, or a higher bill each month.  By the same token, you don’t want to not treat something that is really damaging you just because you don’t want an extra pill.  Discuss your treatment and treatment options with your doctor(s), and keep an eye out for medication cascades and other practices that give you unnecessary extra drugs.
  8. When you are not in crisis and feeling relatively stable, check if there are lifestyle changes or useful vitamins that may help you as much or more than your medications do.  There may not be a substitution possible, but often lifestyle changes(like adjusting eating habits, sleeping habits, or exercise habits) can help more than related medications do.  I spent years on sleeping pills but was eventually able to create better sleep habits so I rarely, if ever, need pharmaceutical assistance to sleep.
  9. If the medication isn’t helping you at all, another consideration may be a misdiagnosis.  If your diagnosis doesn’t feel right and you have tried multiple medications that should help but didn’t, it may be time to search for another perspective on your condition.  I have been treated with multiple anti-seizure medications, which were not helpful, as I don’t have a seizure disorder.   The possible exception, clonazepam, is also frequently used to treat anxiety, and we were never fully certain how helpful it really was for me.  When I was told I had interstitial cystitis, one of the many clues that I was misdiagnosed was the fact that the medication and diet had absolutely no effect on my urinary symptoms.

Conclusion: Could your medication be part of the problem?

Yes, it is possible that your medication could cause new problems, exaggerate issues, or cause long-term damage.  When you take medications, you always want to know why you are taking each medication and what it does to help you.

You also need to take the medication appropriately and regularly.  If you aren’t, you may not be receiving the full positive effects it should cause, or you may be abusing it in a way that increases your challenges

All medications have possible or potential side effects – that is unavoidable.  However, you can choose whether any particular set of side effects are ‘worth’ managing given the way the medication helps you.

Sometimes you won’t have any bad reactions to a medication, which makes the decision easy, and sometimes you have a sensitivity or response that is so severe that taking the medication is not worth considering.  Most of the time, though, it falls somewhere in between.

Once you know how much a medication helps and what side effects it has on you, discuss your alternative options with your doctor.  There may be another treatment option out there that doesn’t have problematic side effects!

The better you manage your treatment and medications, the easier and more productive your life can be!

pintrest image: lower half of image reads 'Could your medication be making you sick?', while the upper half holds a picture of hand, holding multiple different pills.  In the upper right corner of the picture is the Thriving While Disabled logo
pintrest image: lower half of image reads ‘Could your medication be making you sick?’, while the upper half holds a picture of hand, holding multiple different pills. In the upper right corner of the picture is the Thriving While Disabled logo

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8 Comments

  1. I agree about looking up potential side-effects making you sick! Or perhaps sick . . . It can be worrying to read so many potential issues can’t it. I try and make sure I ask my doctor for the main ones and then I don’t read up to be honest. I find it too much to do so. If anything feels different with my body then I look them up and speak to my doctor. Maybe that isn’t the best approach, but it works for me.

    1. Claire,
      I understand not reading up on the side effects! As long as you are ready to seek help if something weird happens, you’re being reasonable on that front. I usually read them over, but I prepare myself mentally for it, telling myself that these aren’t particularly likely and that I don’t need to look for them.
      It’s an interesting balance to make and protecting yourself from unnecessary symptoms is also important !
      Medications are powerful, both physically and psychologically, and you should experience the benefits without reading up on those potential side effects!

  2. It is a tricky pickle when you have multiple illnesses and need multiple medications. I mean the necessary ones. My doctor is constantly trying to thin mine down but it is a hard one to do for me with so many chronic conditions with the necessary medications. But we have taken me off the necessary ones. And I do not like having to be on some for my vertigo that are serious meds but I cannot function without them and neither does my doctor, but there is literally no other option. But we removed my pain killer as a compromise for that. So there is that. It is just so damn complicated sometimes. And side effects vs symptoms can be a real puzzle… especially with things like fatigue. Fatigue is a major issue with FM, migraine and vertigo… BUT many meds cause the same thing so it can actually be making the situation worse. At this time I am not on a FM med by choice though. I feel no need to be with so many others.

    1. Nikki,
      I feel for you on that! There is no ‘right’ or ‘wrong’ number of medications, and having multiple diagnoses definitely adds to the struggle. If the medication is helping significantly, keep it…if it’s causing nasty side effects, try to replace it with something that’s a better match with your body chemistry.
      I absolutely agree that sometimes differentiating between side effects and symptoms of the condition can be hard, and it definitely is a process. You can get through it though!

  3. This is so good for me. Part of the progress also includes self-advocacy and not solely depending on the doctor to solve your issues. When I was switching meds, I had to tell my doctor what I was on already—she was just going to prescribe me without knowing my medication history! For that reason, she changed my medication to avoid potential drug interactions. the doctor and the patient gotta do the homework to make sure optimal support is obtained

    1. Self-advocacy is so important! I write about it in many of my posts. You always have the right to question your doctor and their suggestions. Keep standing up for yourself…we so often need to!

  4. Great post Alison!

    Many times, I’ve had more issues being on meds. My main doctor is very careful with what she prescribes, but last year had an odd experience where another doctor refused to believe that her prescribed med was making me worse, instead increased the dosage. I decided to stop it and suddenly felt better.

    I also feel as patients, we need keep having our meds reviewed.

    1. Shruti,
      Thank you! Medications are often so necessary in managing our conditions, but their very effectiveness means that they can also cause problems or have severe negative impacts on our lives as well! I’m so sorry about that experience you had and glad that you were able and willing to protect yourself.
      Regularly reviewing our meds is important and a great idea!
      Thank you for sharing your experience – medications can have a huge impact and I want us to to our best to make sure that that impact is as positive as possible!

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