Patient Education

I'm back! No, I can't claim busy-ness, as the 4th year of medical school is unlike any other. There's lots of free time! I think it's just preoccupation- interviews, rank lists, WAITING, the match... now preparing to move! Oh yes- I matched in med-peds!!! Not sure if I've mentioned this, but there was a time when I hesitated to do med-peds, when I debated between peds or medicine, or maybe family med. But when I finally realized my hesitancy was a fear that med-peds was more competitive and I might not "get in", I knew that fear is a bad way to make a decision- and instantly I knew med-peds was exactly what I wanted. So now, a little more than a year later- I'm doing med-peds! Never make a decision based on fear. One of my favorite quotes is from Princess Diaries: "Courage is not the absence of fear but the belief that something else is more important than the fear." Never base your course on fear of failure. Follow your heart- you will always succeed if you love what you do; you can never excell if you don't love what you're doing. But back to matching! I am moving to Buffalo in June to start med-peds residency. It's a pretty cool place for me to train for a couple of reasons: they've had med-peds since 1981, so it's a well-established program, with LOTS of med-peds faculty. They've got an awesome, well-established (meaning large patient base) combined clinic with an incredible curriculum for the full outpatient months. They had multiple, clearly-defined opportunities for me to be involved in QI right from the start. They have awesome disability medicine and transitional care opportunities. And they get snow! And finally, it's less than a 4 hr-drive back to Pittsburgh, so I'll be able to come back and visit all my friends at Life Church (and elsewhere in the 'burgh) and I'll "have somewhere to go" during those breaks that are longer than 12 hrs but too short to fly home to Colorado! So yes, I'm pre-occupied with preparations for moving to Buffalo and becoming a "med-ped'er"!!! But that's not what this post is about! As the title reflects, I want to talk a bit about patient education, more specifically, about how we (so poorly!) educate patients about the medications we so (carelessly) prescribe. Why this topic, this morning? Well, because I'm sitting here having just swallowed effexor, excedrin and zomig, waiting for it all to relieve the headache, dizziness and poor coordination that has plagued me since yesterday. I'll explain all that as we go. But let me start with topamax. If you've had any amount of conversation with me in the last few years, you've almost undoubtedly heard my topamax story. It was the 2nd day of the 2nd year of medical school. I'd been on elavil and atenolol previously for migraine prophylaxis (prevention). Elavil is a TCA anti-depressant, and did help reduce my migraines, but also caused the typical side effects of dizziness, fatigue (the most troubling side effect for me, being in my first year of medical school, as I typically slept through lecture and fell asleep while trying to study at home), nausea and other things I can't remember. So we switched to atenolol, which is actually a medication for high blood pressure but at low doses is used for migraines. It didn't give me any side effects, which was wonderful, but it also did NOTHING for my migraines. So as I was starting 2nd yr, I was having "17 migraines a month"- basically daily pain and almost daily needing a zomig (my "triptan" for treating an actual migraine, as opposed to a daily preventative medication.) Previously, when I started atenolo, my doctor had told me I could try it or topamax, an anti-seizure medicine, which had the risk for more side effects but was more powerful. So we'd agreed to try the atenolo first... but I'd misunderstood what he said to be that atenolol and topamax were the only remaining options for reducing my migraines (I think he meant they were the next 2 he would try- he never meant they were the only 2, as I've sinced learned he has many "tricks up his sleeve" and seems to never run out of options. Have I mentioned that I go to one of the best migraine doctors in the country? He is truly a nationally-known expert in migraine, and I'm very "lucky" to be in Pittsburgh and benefit from his knowledge.) Anyway, when the atenolol didn't work, I believed Topamax was the only option left- otherwise I'd be left to deal with almost daily migraines. When the appointment came, that second day in second year, he wasn't in the office so I saw his PA. (I've seen both of his PA's, and they're both awesome, one of the rare places where I don't mind seeing them instead of the MD.) She did, what I thought, was a great job of educating me on this new medication, topamax. She told me it was known to cause "tingling in the hands and feet, which never seems painful or to really bother anyone" (which, in fact, is true. It did cause an odd tingling, not painful like when your foot falls asleep, almost a pleasant sensation. It usually occured after relieving pressure- so when I finished driving and took my hands off the steering wheel, or when I sat down after a long walk- that's when the palms of my hands or soles of my feet would tingle, and if anything I enjoyed the sensation because it told me the topamax was working.) She told me it could cause weight loss, a side effect few people minded. (Indeed, I DID lose weight, ~5 lbs/month, and it's the one side effect I really miss! In fact, topamax is even sometimes prescribed for patients struggling with obesity for the purpose of helping them lose weight. This seems, in part, to occur because of reduced appetite, but I think the weight loss is greater than the reduction in diet, so it must also alter metabolism. It was surely the only time it was easy to lose weight!) She also told me that in "people prone to anxiety" it could increase that anxiety or tendency to worry. Now, it's important to know that at that point in medical school, I was very much struggling with anxiety but in denial, so I thought (and told her) that it wouldn't be an issue. She gave me the prescription, just as Dr K would have, and had me slowly increase the dose exactly as he does it (more slowly than usual- he always makes medication changes more slowly because "migraneurs" are more sensitive to changes...) The first week or two, I didn't feel anything. Every 7 days, I increased the dose by 15mg. I think it was about the 3rd week the tingling began, which as I mentioned before, I didn't mind. I also began to notice a "nausea" which was associated with the expected decrease in appetite. It wasn't the usual nauseous sensation though- it was more a feeling of "sick" or tired abdominal muscles as I walked down the hill to the bus, and a strong desire to sit and rest my stomach. Odd, but something that eventually went away and wasn't a huge deal. But as I got to the higher doses, the other side effects kicked in. The ones they didn't tell me about. The ones topamax is infamous for. The ones that cause so many of the patients I've met who've tried it to say "topamax is nasty." Within a day or two of increasing my dose, I would feel an angry sort of anxiety- mild stressors would leave me resentful of the situation. I remember grumbling about various duties at school, questioning why I was in medical school and complaining about why I agreed to all this work, etc. It was quite in my nature to worry about things; it was not at all like me to get so angry and resentful and just not want to deal with the situation. Even worse, however, was the "pressure" I began to feel. It felt as though the whole world were closing in on me, as though my world was about to collapse and I had more anxiety than I knew what to do with- but I couldn't name a single reason why. There was not one identifiable thing I was worried about, not one explanation I could find for the sense of impending doom that surrounded me. I just felt horrible. I learned about this time that our emotions are (usually) the result of our thoughts, and if I was able to stop my negative thoughts, I'd feel better. But there weren't any specific negative thoughts on my mind- no situation I was specifically worried about- so I couldn't change my thinking. I just felt awful with no specific focus. I remember going outside between classes, just enjoying the fresh air and telling myself "5 more days, just 5 more days" because I knew by the end of the week I always adjusted to the new, higher dose and this "pressure" would go away. But it was during these times that I first truly understood suicide. I'd always struggled to understand why someone would feel so hopeless that they'd think there was no way life could ever get better. But in those days, I felt so miserable that even though I knew it would get better by the end of the week, I hardly knew how to live through the next 5 minutes. I never actively wanted to kill myself or seriously contemplated how, but I did have the "passive death wish", wishing I could just not wake up in the morning... not because I thought it wouldn't get better, because I knew it would!- but because I couldn't live through 5 minutes let alone the next 5 days until it did. The obvious question would be "why in the world did I keep taking it?!?" And, any doctor hearing such a story would say "why didn't you call your doctor and tell him you were having such side effects?!?" Both questions had the same answer: I was under the impression that this was my last chance at reducing the frequency of my migraines- it just had to work- and I believed the side effects would eventually go away. And eventually they did- some of them. I did develop a chronic sort of fatigue, but I didn't realize how abnormal it was for me to need ~13hrs of sleep/day. I continued to lose weight, but didn't mind! And that horrible "pressure" subsided... but in it's place came THE side effect topamax is best known for, the one no one told me about. The one so eloquently described as "mental dulling." And let me just say now that if you're mentally dull, then you're too mentally dull to realize you're mentally dull. Remember I said I didn't realize it was unusual how much sleep I was getting? That's because I didn't "realize" much of anything. I couldn't process, couldn't compute. I remember sitting in lecture- nephrology and GI pathology (sounds fascinating, doesn't it?!?) The lecturer was one we'd had many times before, one I really liked, one whose teaching was always very effective. But I truly felt she was speaking in a foreign language! I couldn't follow what she was saying AT ALL. I'd sit there thinking "I don't have any idea what she's talking about, I couldn't even give you an overall subject... pay attention Tiffany!" So I'd focus, really concentrate... I'd end up listening to each individual word, slowly processing the meaning of the words, piecing together phrases... and by the time I understood the first half of a sentence she was 3 paragraphs ahead. I just couldn't follow lecture! I remember trying to send emails... I'd spend an hour writing and re-writing a paragraph, and eventually give up because I just couldn't seem to communicate what I was trying to say- I couldn't put my thoughts into words. And I remember moments of disorientation- like pulling into the garage I'd been parking in for 2 years, getting out of the car, and finding ~3 feet of it was sticking out of the garage! I'd stare it, wondering how it happened that I didn't pull in all the eay... but wouldn't think much further about it. I remember other things I said- things that I now know didn't make sense, but at the time made perfect sense. The best example was about studying for Step I for the boards. I remember so clearly telling my mom "my classmates are obsessed with the studying. They worship grades and test scores- I'm so glad I'm not like them!" By this time it was spring of 2nd yr, and while topamax had reduced my migraines somewhat, I was still having ~12/mo, basically every other day instead of every day! So my wonderful (and I'm not being sarcastic here) doctor added Effexor to the mix. Now, as an aside, I must explain how migraines work. No, I'll save that for another post. WAY too much to cover. Anyway, Effexor plus Topamax really made a difference- I was down to only 7 or 8 migraines/month- a huge improvement. BUT. Now, I haven't seen this documented anywhere. It might not occur every often. I have no way to prove it and no explanation for it. But in me, the topamax and effexor interacted- takingf effexor in effect increased the amount of topamax in my system, as if I'd begun taking even more. Of course, I was already mentally dull so when things got worse, I didn't notice. But my mom did. This was when it became really obvious I was losing weight- probably ~35lbs by this time. And she KNEW it wasn't like me to be so blase' about studying for something as important as the boards. It didn't make sense to her for me to complain that my classmates carried they're study books with them and talked about it and wanted to get good scores... that's what I should've been doing too! Instead, it sounded like all I did was complain and then sleep through the time I should've been studying. I also remember during that time we had a class where we were supposed to teach each other, and it was the only time I really remember having difficulty working with my classmates. They always seemed frustrated by my presentations, that I would get lost in details, present irrelevant information, and- true to form- didn't seem at all focused on helping them prepare for the boards. Looking back, I understand why they were frustrated! I'm sure my presentations were as useless as they said... but at the time I didn't know what the problem was. Anyway, my mom knew I wasn't sounding like myself. Knowing I'd lost weight, her concern was anorexia. I knew that wasn't my problem, but denying it did nothing to reassure her as those who struggle with it also deny it. So she booked a flight to come visit me for 2 weeks. She watched my every move. she wanted me to stay home and study instead of go out with friends. She constantly asked what was wrong (I wasn't aware anything was wrong, except for her pestering me!) She would discover I'd run out of things like hand soap and ask why I didn't buy more- I just hadn't thought of it! It didn't occur to me to buy more of something when I ran out. That's how badly my ability to process had been affected. But she couldn't figure out what was wrong and I didn't think there was something wrong, so I proceded to ignorantly condemn my classmates, take Step 1, and start 3rd yr. In those first 2 months I did my scholarly project- research on autism. It's amazing I functioned as well as I did in those months- I had an amazing mentor helping to giude me! It was towards the end of those months that I learned I'd failed the boards. I sincerely never expected it to be possible. (My mom, on the other hand, wasn't really surprised, but still didn't know what was wrong with me! And by the way, I didn't fail by a little bit, etiher. My score was WAY low.) I worked through the shock, went back to "studying" and had a plan to keep moving forward. I concluded the reason I failed was because I'd gone home and been distracted when I should've been studying, and I also hadn't felt well- I'd been sleeping a lot due to what I blamed on reactive hypoglycemia. I'd have a milk shake for lunch and then sleep through 3 good hours of study time. I remember my dad so clearly during that time saying all I did was sleep and play on the computer, wasn't I suppose to study? But he just didn't know what he was talking about (according to my dulled mentality, at least!) So now that I'd failed, I decided he was right, found a new doctor who could "fix my hypoglycemia" and stayed in Pittsburgh while I took a month of to study and re-take the exam. Then I could continue 3rd year, and the "only" consequence was that I'd only have 1 free month in senior year. My mom could tell I didn't study any more in that month off than I had back in spring when I was "studying" in Colorado. But I thought I was doing ok... until of course I failed, AGAIN. Now I panicked. Well, actually, no, not yet. I still didn't get it!!! My score had gone up- this time I only failed by a little bit- and I really don't think I even thought much about why I'd failed twice when most of my class passed the first time... I just went on "studying." This time the school thought I was so close, I could just study while taking some of the easier 3rd year courses; no need to take time off and end up delaying graduation. And for a while, I thought that would work. Now, I mentioned a while back a key point- I found a new doctor. Not a new migraine doctor- I still see and love him- but a new primary care doctor. See, you only see a migraine doctor every 6 months or so, and I hadn't told him I'd had any side effects because I didn't want him to stop my medication and leave me with constant headaches! So he had no way of knowing what was going on.... the PCP I'd had previously really was the perfect example of a horrible physician. He had no patience for me, thought because I was a medical student was "perfectly healthy and just thinking I had the diseases I studied" and would totally dismiss what few complaints I was able to recognize (like being so tired all the time.) So I gave up on being "anonymous" and went to a doctor who was also a faculty member, someone who also knew me as a student, but someone who I KNEW was a good physician. I think from the very first visit, when I hit her with a list of like 13 things I wanted her to fix (doctors hate those kinds of visits!) she told me it was the topamax and I needed to stop. I was SOOOO not going there! Mainly because it not only helped my migraines, but because if she was wrong (and I really thought she was) I'd have to go through that horrible suffering a second time to get back on it. There was no way she was stopping my topamax! But she helped with a lot of other things- helped me get into physical therapy for a lot of my aches and pains, pushed me to get some counseling for anxiety, took my complaints seriously and got blood tests to prove to me I didn't have lupus or hypothyroidism or anemia. And she helped me prioritize, focus on one thing at a time, instead of catastrophizing every little ache and pain. See, she was teaching me the cognition topamax had eliminated. Most importantly, it was during this time I was supposed to take the boards for the 3rd time. As the date drew near, I was finally beginning to realize I had no idea if I would pass and that it maybe mattered! I began to panic... I asked the school if they'd allow me to continue if I failed a 3rd time. I wondered if I could take time off. I watched the calendar, knowing the date I had to cancel by if I was going to postpone the test. I worried constantly. Finally, a few days before the deadline, I had an appointment with my teacher/doctor. I went hoping she could give me some guidance, secretly hoping she'd tell me I had to postpone the test and take time off. I wanted to, but was afraid to say so. I got to her office to learn there was a scheduling glitch and she didn't have an appointment with me; in fact, she was done seeing patients and had a meeting! But my ever so patient doctor told them to let me wait and she'd see me after the meeting. They must've seen how stressed I was and took pity on me. When I did see her, she listened to how stressed I was, and finally suggested I take time off, told me she'd tell the school I needed a medical leave of absence, and that I should postpone the test, that they were setting me up for failure and it wasn't fair. I breathed a sigh of relief and said "that's what I wanted!" I remember her so clearly laughing and saying "why didn't you tell me?! Next time, if you know how I can help you, tell me instead of making me read your mind!" Good idea. Probably never thought of it because of the topamax. Anyway, the test was postponed, med school was put on hold, and a great deal of stress was relieved. this was when I worked on the physical therapy, counseling and the like. But my PCP was also telling me I needed to get off the topamax, and I adamantly refused. All I could think of was having to restart it. I was NEVER going there again. My mom, meanwhile, kept contemplating all she knew, trying to figure out what was going on. She finally realized that things had really gotten bad around the time I started the effexor. Pretty soon we were telling my PCP it was the effexor I needed to stop, not the topamax. She kept saying we were wrong. (She was so patient!) This is why I say they interacted in me- when I added the effexor, the topamax "dulling" got much worse, and all we could do was connect my "downward spiral" with the timing of the effexor... it didn't make sense at the time to blame the topamax. BUT. One day I forgot to take the topamax. And took it late the next day. Certainly not intentionally (any time I did forget, I felt some of the old pressure return when I did remember the following day.) As soon as I remembered the 2nd day I took it, but I also realized I'd felt better during the ~36hrs I'd been off it... I kept thinking about that, and I think I "accidentally on purpose" skipped another dose a few days later... I slowly began to realize I felt better when I didn't take topamax. I talked to my PCP, and she finally convinced me to stop taking the topamax. THAT DECISION SAVED MY FUTURE! Within days I felt WAY better. My mood was improved, my thinking was clearer, I was less troubled by life. I remember thinking "I don't like the person I've become" but I couldn't have told you exactly what it was I didn't like. It just seemed like life wasn't working for me. Stopping topamax changed that feeling. What's more, every week I felt better than the last. After a few weeks I felt dramatically different, and even 3 or 4 months later I was still feeling continued improvement. I very clearly felt I had received a brain transplant, my thinking was so transformed so quickly. I also slowly recovered from my fear of effexor (since the topamax side effects had worsened when I increased effexor, I had insisted on staying at a low dose) and eventually increased the effexor to the point of having my migraines reasonably well-controlled! I also took time off from school- medical leave. It gave me time to straighten out my meds, and also gave me time to study for the boards. There was a brief time of stress when I learned I'd have to work in some way to support myself- time "off" wasn't really time off after all! But God had a plan, as always. I worked in the pediatric neurosurgery office for 4 months. I worked with some great people, had a non-stressful 8-4 type job, and was easily able to study at night and on weekends. Furthermore, it was the perfect complement to my work before med school. At Penrose I'd been a part of inpatient administration; now I got to see outpatient administration... I was involved in CPT and ICD-9 codes, insurance authorization, etc. It was a wonderful experience- beneficial and enjoyable. The ultimate test, however, was in retaking the boards. I felt somewhat confident knowing my score had gone up between the first 2 times, and that I'd been just under passing the 2nd time. I also knew I'd studied more than previously! But I'd lost the level of self-confidence that previously had me "assuming" I'd pass just because I'd "always been a good student" and "hadn't had trouble with tests" previously. (Another example of how topamax twists my thinking- I HAD struggled with tests throughout the first year of medical school, and consequently had a lot of stress over tests during 2nd year, so it made NO sense to suddenly be unconcerned about the boards...) I took step 1 for the 3rd time, knowing I was continually improving and that I'd have the chance to take it yet again if I needed to... I also knew (having gone through it twice before!) which day I was likely to receive my score, even though they don't really tell you when it will be available. SO- on that day I was checking the website "just in case." When I found out I'd passed, I belive my reaction was equivalent to when I learned I'd gotten into medical school. I was so thankful for Karen, one of the ladies I worked with, because she knew I'd been studying and bit of my stress over the test, and she helped me celebrate when I told her I'd passed. It was an overwhelming moment- actually brings tears to my eyes even now to remember all that emotion. I learned a lot about not taking knowledge or the ability to learn for granted, and how to balance a healthy self-confidence with a necessary humility. But this is about what I learned about patient education! When I was prescribed topamax, I was NEVER told it could cause mental dulling- and they knew I was in medical school! Since then I've seen many patients on topamax, and have met many of them who tolerate it well with minimal side effects. As with all medications, everyone responds to them differently. I've met other patients who hate effexor as much as I hate topamax. I've also seen several doctors prescribe topamax for the first time... most of them provide less education than I received! Mostly they mention nausea and fatigue, emphasizing they usually go away with time. Should patients be told more than that? Should everyone be warned about mental dulling? Or should those with highly intellectual jobs- like medical school!- be warned? One of the many aspects of the art of practicing medicine is in deciding how much to disclose when prescribing a medication or getting consent for a procedure. If you say too little, the patient might make an uninformed decision, or not recognize the source of future complications, delaying proper treatment. (If I'd know topamax could cause difficulties thinking, would I have stopped it sooner?) But if you cover too much- to the point of everything known- it would not only take too long, it would confuse many patients and would fully scare others. When getting consent for procedures, the details covered are usually balanced by severity and likelihood. If it's rare but serious (like death after anesthesia for a minor surgery) it'll still be covered- for medicolegal reasons, and so the patient and make an informed decision to continue. If it's not so serious and rare, it usually won't be mentioned. Similarly, if it's not serious but quite common, it'll be mentioned, so the patient knows what to expect. These determinations are more complicated with medications, in part because patient response is so varied. There's no way to predict who will respond to topamax like I did and who will tolerate, so you can't have a sense of "how common" the mental dulling is. Also, the severity of side effects if difficult to measure- fatigue to me might be much more serious than someone who is able to sleep late and take naps during the day. I tend to think more disclosure is better- cover all of the more common side effects even if you think the likelihood is low... but what constitutes "more common"... and how well can doctors know all of the common side effects for all of the medications they prescribe? Not to mention the time it takes to explain them. You don't just tell a patient "this could cause bone less, think skin, poor dental health, mood swings and weight gain." You have to explain those statements! (By the way, that's an example of some of the side effects of prednisone, a common medication for which patients usually DO receive good education because the side effects are SO common...) So my first conclusion about patient education is that it needs to be more of a priority. I think a physician should have a collection of resources- articles, websites, information sheets- for the medications, diseases, procedures, etc- commonly encountered in his (or her!) patients, so they con provide material for any patient interested in reading more. Also, some offices are set up so that the nurse spends time educating the patient on new medications, which can be especially useful for the ones most commonly prescribed. But I have another conclusion, one which is even more important. CLOSE FOLLOW-UP is essential to providing good care!!! Regardless of what I was or wasn't told about topamax, when it was prescribed I was given a follow-up appointment in six months (the usual) and probably told to call if I had any questions or concerns. But have you ever called a doctor's office with questions or concerns? It's rarely that easy!!! It takes a good deal of persistance to actually get an answer to your question. If I had been seen a month later, they would've asked if I was experiencing any side effects. When I answered yes, they could have corrected my misunderstanding right then, that there were other options, stopped the topamax and tried something else. The entire ordeal of taking the boards 3 times, not to mention the rest of the topamax "misery", would've been avoided. Alernatively, if there were a reasonable way to contact my doctor (via email, perhaps), I would've been much more likely to contact him with questions when the side effects first developed. More and more doctors are using email as a way for patients to get questions answered without the hassle of trying to call the office. I think it vastly improves communication, allowing the patient time to think of questions, giving the doctor adequate time to answer (not to mention ensuring the doctor actually gets the message!) and also helps the patient feel that asking questions is more feasible and less of a nuisance to the physician. Interestingly, I think I remember calling the office shortly after starting topamax because it was making me tired, and I'd recently stopped a medicine because of fatigue was particularly concerned about that side effect. They assured me it would go away... so if I called just because I felt tired, why didn't I call when I was feeling so miserable I wished I could die??? I wonder if that was the mental dulling, the inability to process "if ____ then I should _____", just like not replacing soap when I ran out. The only way to avoid that would've been follow-up, someone asking me "are you having any side effects." Better education might've helped me recognize the mental dulling and call (when lecture seemed to be given in a foreign language...) but I HAd been told about the "anxiety" and didn't call because I was in denial. The only thing that could've stopped that was a pre-set follow-up appointment... or someone taking a little bit more time when asking if I had any trouble with anxiety! (At that time, I knew I did, but lacked the courage to volunteer the information and ask for help. I remember various physicians screening for anxiety/depression but never slowing down long enough to notice my hesitation or less-than-convincing answer...) So there are many lessons to be learned from my experience with topamax... but if you can still remember back to the beginning of this (lengthy) post, I mentioned having an extreme amount of pain and dizziness... now it's time to explain why: effexor. When I was started on effexor, I believe they told me it could cause constipation (it does!) They also told me to take it in the morning as it can cause people to be more awake and have trouble falling asleep. I really liked the sound of that! Once I was off the topamax, I experienced very few side effects. I always took it in the morning, and haven't had any trouble with sleep or fatigue. As mentioned, it does cause constipation but that's easily remedied by taking magnesium (side note: magnesium is known to reduce headache as well as muscle and joint pain; it is also a natural treatment for constipation and I belive it is highly under-used.) At higher doses, it also causes "heat intolerance"- for me, that means I get hot flashes! That's sort of hard to explain when you look like you're barely 20, so when I'm all red and fanning myself, I tell people I "overheat" because of my medicine. That's what it feels like! It's annoying, but SO much easier to deal with than the topamax. But this is a side effect I was not told about beforehand. Should I have been? I don't feel particularly strongly about it, but I did go online and research the medication to find out that it was, indeed, a side effect. Many patients would have difficulty finding that information... that's where better access- either email or an easy way to communicate with the doctor between visits, or printed information, readily accessible, provided to every patient for every new medication- would be beneficial. But there's one more detail about effexor that I wasn't told about: withdrawal. Many medications "mess with" our bodies' normal systems. In the case of effexor, it provides an external stimulus to increase serotonin (oh, another great topic for the future would be serotonin and it's role in appetite, mood, pain and more.) As a result, the body becomes somewhat dependent on the medication- if you remove it suddenly, it will take a while for the body to "turn on" and increase serotonin on its own. In the meantime, you experience withdrawal. I recognized early on that if I forgot to take a dose, within a few hours I would begin to feel dizzy. I describe as feeling as though my brain is spinning within my head, as though my eyes are spinning in the sockets... if I turn my head, it feels like my eyes or my brain don't keep up, and if I turn my eyes it feels like my brain spins the other way. Very distracting! I (again) did some research to learn this was typical with effexor and simply learned to 1)remember to take my medicine! and 2)I must've forgotten whenever I begin to feel that way. (Another side effect I was told about was that it causes one's eyes to dilate, so I quickly learned that if I wasn't sure whether or not I'd taken it, I could look in the mirror and my eyes would tell me!) I've always been somewhat grateful for this phenomenon, as it ensures that I don't miss any doses! If I forget, I'll be reminded! Once I forgot and didn't have any extra with me, so I went many hours without it... and learned that as time goes on the withdrawal only gets worse! In addition to feeling increasingly dizzy, I began to get a headache and feel nauseous and overall just "not well." So I've always tried to carry extra with me, so I can take it as soon as the dizziness kicks in, as it takes a few hours for the dose to set in and relieve the wthdrawal symptoms. Anyway, the day before I started this (yes, it is that long that it took several sittings to finish!) I really thought I'd remembered to take it. I went through most of the day feeling fine, though in early afternoon I had a headache threatening and wasn't sure why. I took a nap, and when I woke up I was beginning to feel dizzy. (I get dizzy from BPPV- an ear thing- much more commonly than from forgetting my effexor). I didn't think much about the dizziness- just thought it was my ears. But my head still didn't feel right and I still felt sort of tired or out of it... but it was Thursday, and I was determined to go to small group, so I simply left early. I knew once I was out of the house I wouldn't be tempted to just go back to sleep! As I walked around the bookstore while waiting for small group, I began to feel more and more dizzy, reaching the severity at which it's unusual for it to be due to my ears and I would usually think about effexor withdrawal. I still really believed I'd taken it, but I was so dizzy I was beginning to doubt it. (Unfortunately, I totally forgot about checking to see if my eyes were dilated or not.) So when I went out to my car I was going to take some extra just in case... but I didn't have any with me! I wasn't about to turn around and miss small group now, so I figured I'd just have to last another 2 hours and I'd take it when I got home if I was sitll feeling dizzy. By the time small group was over, I'd totally forgotten about it! The dizziness was totally gone, I felt fine... and concluded I must've taken the effexor that morning like I'd thought. Late that night though the dizziness began to come back... I thought it awful strange for it to come and go, especially because I would've been ~12hours late by that time, and if I'd really missed the effexor I should've been much sicker! So I went to bed, figuring I'd take it in the morning anyway and be back on track whether I missed it or not. Apparently I should've taken some just in case. For most of the night I slept for only ~30min at a time, having dreams about migraines and then waking up in so much pain, all I could was lie there and try to fall asleep again. It hurt too bad to get up and take something, and I wasn't sure what to take anyway. When I finally got up the next morning, I was still trying to figure out what to take, when it finally dawned on me- I MUST have forgotten my effexor, and this pain was the result of being a full 24hrs late. Ouch! (I was, by the way, still quite dizzy and also felt like I was stumbling around instead of walking smoothly...) That was the point at which I took effexor, zomig and excedrin and started this blog while waiting for some relief. (At some point I began to feel better and slept all morning while the effexor went to work...) After all that, it was time to do some more research on effexor withdrawal! Yes, it is commonly reported. Yes, it involved dizziness, lack of coordination (remember I felt like I was stumbling around) and headache(that's an understatement!) Yes, the dizziness is described at "your brain doesn't keep up with your skull when you turn your head." Exactly! But here's what's more interesting. Many doctors have been slow to acknowledge this occurs, claiming that there "shouldn't be" withdrawal. (I hate to tell them, there is.) There are also a lot of patient reports that when they try to stop effexor, just slowly decreasing the dose isn't enough to avoid the withdrawal. Several of them describe opening the capsule and counting the number of "balls" or granules they take every morning to wean down by that small of an increment. Now, you can find all kinds of things on the internet and I don't know how often it's that severe or if it can be fully blamed on just the effexor. But it was clear the withdrawal syndrome is well-documented, consistent across many (all?) patients, and especially common with effexor. Doesn't that sound like something a patient should be told when starting a new med? "If you forget a dose, you can get very sick so try to take it the same time every day and always have extra with you in case you forget..." Back to patient education. There are a few other things I've had to learn for myself about effexor. I had to look up "hypnagogic and hypnopompic" hallucinations... basically as you're just falling asleep or just waking up. For a time, I was experiencing the latter. As I was just waking up, I would feel sure I heard someone walking down the hall (I live alone) and a few times I was sure someone was standing right over me or sat down on the edge of my bed. Not only is that scary, it was all the more eery because I flet frozen, couldn't move, open my eyes or even whisper my landlord's name in the hope it was her (and not an intruder). It would only last 30-60 sec, and then I'd be fully awake, no one around, and wondering if that'd been a dream or what. But way back early in med school, they taught us about hypnagogic and hypnopompic hallucinations, and the words are so unusual, it stuck in my memory, so I quickly figured that was what was happening- I just wasn't sure why! So back to research I went... and learned they are another side effect of effexor! Knowing that helped a lot. (By the way, the stage of sleep right before you wake up includes a sort of paralysis, and when the sleep cycle is disturbed, it is possible for you to be "awake" as far as alert and thinking, but still "paralyzed" as far as voluntary movement, which explains why I felt frozen during these experiences. Sleep is a fascinating subject to study...) And while I was reading about these phenomena I also learned effexor can cause "vivid dreams" which indeed I experience! I dream a LOT, rarey bad dreams, often a bit unusual though, and always very "vivid"... they seem so real I sometimes have to really convince myself I only dreamt ____ happened, and I'll find myself thinking about them and "re-seeing" the scenes over and over throughout the day. (Good thing they're NOT bad dreams!) So to review: I experience withdrawal, vivid dreams, occasional hypopompic (I love those words!) hallucinations, hot flashes, constipation and eye dilation from effexor. I was only told about 2 of those 7 by my doctor; the rest I had to research and discover on my own. Again, fine for me but not feasible for all patients. And this is the perfect example of side effects which I consider mild and can easily deal with- it's not worth changing medications over them- but it's much easier to cope with them if you know the source actually is the medicine. Providing patient education can prevent SO many hassles, complications, fear, confusion, and suffering. And it's a perfect passion to combine with my interest in QI- I imagine working in the outpatient setting to develop systems which allow quality education to be feasibly provided for all patients on medications, test, diagnoses, procedures, etc. That's all for now- I'll resist the temptation to launch into the effect of media on medical knowledge in the general population (for now) in favor of getting to sleep before midnight (that leaves me 5 minutes...) I'm working on another blog about hockey and why I'm a Fleury fan. In the meantime... go Pens!!! vivid dreams This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 Unported License.