Talk About Your Medicines

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As I mentioned in my last post, I was asked by the American Recall Center to participate in their November medication-awareness campaign. For their own awareness article they’ve written specifically about the oral anticoagulant Xarelto and some of the dangerous side effects that have been recently linked to it. To read that article click here.

As someone with an incurable illness, medication – like it or not – is, and always will be, part of my everyday life. It goes hand in hand with the quality of my life and has the power to hugely impact how I feel from one minute to the next. While I definitely wish that there wasn’t a need to be on it all of the time, there is, and that’s the reality of being chronically ill. So, here’s a bit about my personal experiences with medications.

Before I had even gotten the correct diagnosis (at about 15), I had been tried on so many more medications than I can accurately remember now. And, as is the way it often goes, virtually every one of those was ineffective or unpleasant. Some ranged from simply not working for what it was prescribed for, to being debilitating or landing me in the ER. Most of the medications I’ve been tried on thus-far have been to counteract two of the most difficult aspects of my illness: insomnia to an often extreme degree, and chronic pain. Sadly, these are two things that are very complex to treat. There’s not one simply safe, fix-all pill for either.

As with most medications, you have to weigh the benefit against the risks and decide whether it’s worth it or not. You also need a doctor who’s willing to help you find what works best for you in your unique situation. I’ve always been really disciplined with medications for both sleep and pain. I’ve always made sure to only ever use them when absolutely necessary and have kept myself thoroughly educated about the numerous downfalls and dangers of both. When my pain did eventually become crippling enough that it was necessary to have round-the-clock pain medication in order to cope with it, I found it really hard to come to terms with. I never wanted to be on that kind of medication for the rest of my life. Having to take that step made me feel weak, even though in reality by normal pain standards, my levels of pain were still at a fairly extreme level all of the time. Aside from the physical consequences there’s also a great deal of stigma and ignorance surrounding pain medication, even when it’s being used appropriately and solely for pain.

My opiate medication’s side effects are quite limited overall compared to the other classes of medications I’ve been on, but it’s still not without it’s pitfalls. For instance, when used long-term your body’s natural pain-killers forget how to do their job properly. Your body also eventually adjusts to the medication and starts to need more of it in order for it to keep working on your pain. This is called “tolerance” and is an unavoidable side effect of opiate medications when needed for an extended amount of time. Opiates can also cause nasty “rebound” headaches in many people when used for more than a few days in a row. And while it’s been proven that people who suffer from chronic pain are generally much less likely to become addicted to pain medications than others (for various physiological and psychological reasons) it’s still a risk and must be taken seriously. I wrote about all of these things a few years ago in this post.

It’s been just over a year now since I was put on a consistent and constant dose of pain medication, and while it’s made my otherwise crippling pain bearable, it hasn’t made it disappear and it hasn’t been without it’s consequences. I still struggle with my pain to some degree 24/7 and most likely always will – there’s just no simple fix for that. Still, I am extremely grateful that this has been available to me, especially knowing that in many countries and situations it wouldn’t be. I can’t even imagine being able to handle that kind of pain at all never mind being able to find any enjoyment in life with it.

Sleep medication has always been difficult as well. There’s a viscous circle that having both insomnia and chronic pain results in. I often can’t sleep because of my pain levels, which keeps my body from getting any rest or break, which in turn causes my pain levels to increase tremendously, again making sleep impossible, and so on. The medications I do use on occasion to help me fall or stay asleep often won’t work during bouts of my more extreme insomnia. They’ll often make me feel more tired, but still won’t allow me to sleep, which is horrible. Other times they’re a life-saver, allowing me to get some desperately needed rest.

I’ve been suffering from chronic headaches since I was a child, so many of the earlier medications that I was tried on (and there were many) were for this. These medications in particular were often horrible with their side effects. One of the worst side effect profiles I’ve ever seen, never mind only counting things that I’ve been on, was for a medication call Topomax or Topiramate. Topamax is primarily an anticonvulsant used in the treatment of epilepsy, but it’s been shown to improve migraines in some people. That’s why I was put on it about 3 or 4 years ago. I wasn’t made even remotely aware of the dangers of this medication and at the time had just assumed it was safe, otherwise my doctor wouldn’t risk putting me on it. I know that all medications have the potential for serious side effects, but despite the multitude of medications I’d been tried on up until this point, I had never even come close to experiencing effects as severe as the ones I had while on this.

Looking at the incredibly long list of serious and often permanently disabling or life-altering effects this medication can have, I can’t help but be angry that as a 16 year old I was put on it, without even a warning. At first, though it wasn’t helping my headaches things were generally going fine, but the longer I was on it the more symptoms I started experiencing and the more progressively severe they became. I had no idea that they were from the medication and because they were all neurological in nature I was terrified as to what was going on and why. The first thing that prompted me to start doing some research were eye tracers. I had assumed that because of my history with eye problems that it was just something else that was going wrong with them. While doing research on this symptom I was stunned to see the name of my medication come up as a common denominator, mentioned by about a dozen other people describing the exact same thing.

Other frightening side effects that I experienced while on this medication included nerve pain: I started getting these unpleasant electric shock sensations all over my body. Later I noticed this strong and unsettling pulse-like sensation in my stomach just above my belly button, which my doctor simply wrote off as anxiety. By far the scariest thing that I experienced was this sudden and extremely uncomfortable sensation throughout my body. For a moment it was like I couldn’t see or hear properly and then all of the sudden my legs went weak and I couldn’t think. I couldn’t even remember what I’d just been doing. The entire episode was brief but none-the-less terrifying. At the time I was sure that I must have just had some sort of mini-stroke. This was the final straw with this medication and without fail (thankfully) every single one of those symptoms disappeared for good once I had been weaned off of it (after doing some research and consulting my doctor).

Because everyone is so different, I do have to mention that overall my body has never tolerated medication very well. I often get the rarest of side effects, without the intended benefit. Because of this there are some medication classes that I can no longer be given at all. Two of which are SSRI’s and SNRI’s, which I had been tried on fairly early after my illness started effecting my day to day life. There are a few different reasons that these medications are prescribed in relation to chronic pain and illness. One is to help with any resulting anxiety or depression the illness may cause and the other is to help minimize the sensitization related effects that chronic pain has on the brain and body. See, when you’re in pain for an extended amount of time your brain begins over-firing pain signals. This is (as it’s been explained to me) largely because our bodies are not adapted to handle pain 24/7 – it’s unnatural – so what results is that our fight and flight response becomes heightened and overactive. So, while antidepressants won’t work on the root cause of your pain, they can sometimes help in calming or halting the amplification of the pain signals being fired out by your brain.

I’m not sure why, but early on when I tried various kinds of these particular medications I was able to tolerate them fairly well. I was never continued on them long-term due to their various moderate side effects, that weren’t worth living with because the medication wasn’t having it’s intended effect anyways. Eventually I went on a break for a year or two after being unable to find any that worked for me and being exhausted by the long process of searching for one year after year. The first medication that I tried when I was ready to start looking again was Cipralex. I had been on it for about two weeks and so far the only side effect of any note that I was experiencing was an upset stomach. But, out of the blue, I ended up with a very rare side effect known as urinary retention – the acute inability to urinate. I didn’t even know that was a thing and because I wasn’t really sure what was going on I just assumed that if I had to go desperately enough then eventually I would be able to – big mistake. I had purposefully been drinking a large amount of fluids thinking that if my bladder was full enough that I would simply and unavoidably have to go. Eventually, after not being able to for 17 hours despite trying for hours on end, it became clear that something was definitely wrong and I wasn’t going to be able to go at all. By then the pain had become so severe and unbearable that my mom had to rush me to the hospital where my bladder was immediately drained with a catheter. The nurse said that the bladder comfortably holds about 500 ml of urine and that by the time I’d gotten to the hospital mine contained 1200 ml. I was also told that I was lucky that no permanent damage had been done and that next time I should come in as soon as I know what’s happening (but they didn’t have to tell me twice!).

The doctor on call told me that it was undoubtedly from the medication and to stop taking it immediately (you’re usually supposed to be weaned off this type of medication for safety reasons). It took a little while for things to go back to normal entirely but luckily I didn’t end up having to go back to the hospital. My family doctor said I was the first person she had ever come across in her 20 years as a doctor that had suffered from that side effect. We assumed that it was just a severe reaction to that particular medication since I had been on several similar kinds before without that effect. Just to be on the safe side, the next time she tried me on that type of medication she decide to use the closely related SNRI class instead on an SSRI. Strangely, – after only two days this time instead of 2 weeks – this medication started having the same effect and I again ended up having to go to the hospital. This time, while my bladder was still working somewhat, it was becoming enough of a problem that I was unable to take any pain medication (they can also increase or even cause urinary retention) without it tipping it past the point of being manageable. Unfortunately, I happened to be in such an extreme amount of pain that day from a crippling migraine that I needed them to either try giving me a different type of pain medication or hooking me up to a catheter so I could safely take my own.

Again, I had to immediately stop taking the medication, but now we knew that for whatever reason I could no longer tolerate these types of pills at all. I don’t know what changed in the time that I stopped taking SSRIs and SNRIs to when I tried them again that made me unable to take them. I’ll probably never really know. I’m lucky that stopping them so suddenly didn’t cause any of the long term harm that it can. It’s frightening to think that just like that I could have ended up with another health problem on top of everything I was already struggling with that had necessitated the medication in the first place. My sharing these particularly negative experiences isn’t intended to make everyone afraid to take medication entirely. Everyone is different and we all react in our own unique ways to things. What may work miracles for one person may do the opposite to the next. It’s very much an often long, trial and error kind of process. I definitely understand how utterly defeating it can feel if you keep trying with no benefits to show for it. All I can really say is: try not to lose hope and keep trying for as long as you can. Keep informed: new things are always changing and being discovered and you never know what may be the answer for you.

One of the intentions I have in sharing these experiences is for people to hopefully realize that education is extremely important in regards to the medications you’re putting in your body. We so easily assume that our doctors know every side effect or interaction for every medication they place us on, when in reality that’s just simply impossible. There’s just far too many different kinds and specific variations in each individual circumstance. I’ve been prescribed medications many times that say specifically not to take them when suffering from some of the health problems that I’ve already been diagnosed with. I’ve also been prescribed medications that aren’t supposed to be taken with something else that I’m already taking. It’s definitely frightening and frustrating at times, but these occurrences are the reason that taking an invested interest in your own health – however you can – puts some of the control back in your hands and can make a huge difference. And while you always have to use the internet wisely and responsibly, we’re incredibly lucky that we live during a time where virtually any information imaginable is available to us with just a few clicks. This doesn’t mean that you should stop communicating with your doctor of course – you should always come to them about what you’ve learned and consult them before you stop taking a medication. Also, don’t hesitate to phone or go to your pharmacist with any questions or concerns that you may have. They are generally very knowledgeable and helpful when answering your questions.

Medications are often a very vital part of living as well as possible with a chronic illness. And while we can’t necessarily control whether or not we need to take it, we can control how much we know about it and what we choose to do with that knowledge.

Is this what you ordered, Sunny? by Aurelio Asiain

Do you need to take medication regularly? What have been your experiences – both good and bad – with it? Have you been able to find something that works well for you?

A new step: Beta blockers.

As I’d mentioned a few posts ago, I had a doctor appointment last Friday. I told my gp about the change in my heart rate, and we made the decision that it was time for me to start beta blocker treatment. In many ways this was a bitter step for me. It was an affirmation that there is something wrong with my heart, it’s reality. It’s a scary thing to think about. When I write and talk about the aspects and dangers of my disorder in regards to my heart there’s a certain technical feel to it, I feel like I’m just talking facts and medical jargon. It’s important to me that I switch of any emotions that might personalize what I’m saying because I feel stronger and safer that way – it helps me cope. But, there are certain moments and milestones that hit home hard for me. Being reminded three times a day when I take this pill that I may very well need heart surgery someday or that I’m at 100 times greater the risk of aortic dissection makes it that much harder to keep those thoughts out.

The beta blocker my doctor decided on is Propranolol. It is also prescribed to treat many different types of headaches so she was hoping that it may help mine. To start with I had been taking 40mg three times a day, equaling out to 120 mg, but my heart rate started to climb again, so we upped the dose to 60mg three times a day. They definitely do make me more tired and weak, some days being worse than others. They’ve also made my circulation and Raynaud’s syndrome worse, where my thumb and sometimes other fingers and toes turn dark purple and become freezing cold. I’ve been experiencing the vivid dreams that can come with this particular beta blocker, but so far not the nightmares that they warn of. As for insomnia, I don’t know whether the pills are making it worse or if I’m just going through another bad spell. My headaches haven’t gotten any better, but I don’t know if I’m on a high enough dosage yet for that. My current dose is still not as high as I’m meant to get it up to, but they recommend a steady, slow increase so that you can safely monitor your blood pressure.

I feel very overwhelmed today. Family and social stresses in combination with the fact that my body is wreaking havoc is beginning to take it’s toll. I’m exhausted and in a lot of pain. I’ve been very lethargic while on the beta blockers and if it weren’t for the intolerable heat I’d be trying to nap right now. I truly, truly hope that those who are healthy do not take it for granted. I’d give anything in this world to have that one thing.


On an entirely different note, here’s a photo that I took at the height of flooding season. I loved the way that the reflection on the water looked with the beautiful sky.

Pain Sucks…Painkillers Suck Too

Hi guys,

First off; I know that I pledged to do one blog post each day about a different rare disease in order to raise awareness for rare disease day, and I know that I said I’d get it done no matter what “no excuses” but that kind of flew out the window when I ended up being in so much pain that just getting out of bed became a long, tempestuous struggle.

I had the worst headache of my life about a week ago, and with my headaches that’s really saying something. I never went to the hospital though, taking painkillers for my headaches had been recently only making them come back much worse than they started – this is known as rebound headaches. I was doing my best to get every bit of medication out of my system in the hopes that the pain would eventually settle down because of it. And, after a long, long night of being in excruciating pain if I moved even a fraction, the headache finally did relent. That was about the third day in a row that I had been suffering with a fairly severe headache. But, somewhere around the third night something switched in an instant. The throbbing that I would get at the slightest movement became extreme and virtually unbearable. It was one of the most intense pains that I’ve ever felt. I wasn’t at home when it got that bad and the car ride back was miserable. Every tiny bump, every corner felt like a jackhammer to my skull. That would replay in my mind every time I contemplated going to the hospital; getting up, going down the porch stairs, getting in the car and the drive there. They all sounded excruciating when I was doing everything possible to avoid just rolling over in bed.

Anyways, that’s over with, thank goodness. I’ve had to continue my sporadic use of pain killers, functioning with the back and rib pain is just not possible but so far they haven’t given me any major headaches. From what I’ve read online codeine is one of the worst opiate medications for causing rebound headaches. People who take pain medication for headaches are also the ones most likely to suffer from rebound headaches (how fair is that!?). I also found a general rule to follow to help avoid them: 2 days on 5 days off. This means that you can take your medication as needed for two straight days but then you need to wait 5 days before you can take it again. This isn’t a solid rule, my pattern seems to be more along the lines of 3 days on 3 days off. And if I need to break the rule I have to ask myself if getting rid of the pain I’m in and risking a nasty rebound headache is a good trade off. I don’t usually ever even take my painkillers unless I have to. And sometimes the pain is most certainly greater than the risk of the dreaded headache.

Actually, the more I read about pain medication the more bummed out I was. I kept coming across all of these terrible stories about people being given them short term, after surgery etc and then having a horrible time getting off of them because of the headaches and general withdrawal symptoms. Doctors, at least in my experience, don’t do nearly enough to educate people on the long term effects of pain medications. They give them to you and bang, that’s that, stop taking them when your supposed to, no mention of how much you’ll suffer until your body’s clean and clear of them or what to expect. It’s dangerously reckless and it can ruin peoples’ lives.

I should make clear that addiction and physical dependence are two very different things. Addiction comes from reward seeking behavior, looking for the ‘high’, taking more and more pills to get it. Physical dependence is unavoidable if you regularly use painkillers. It doesn’t mean your an addict, it means that you’ve been on the medication long enough for your body to become dependent on it, it has nothing to do with your mind or a high. If I were to take my tylenol 3s or dilaudid on a regular basis my body would no doubt begin to need it and experience withdrawal if I were to stop taking it. It’s no different with antidepressants or beta blockers, you have to ease off of them. That’s what the rebound headaches are. See, if I’m going through a ‘bad spell’ and need to take my meds 5 or 6 days in a row, the day I stop taking them I get the really bad headache. That can create a viscous and painful cycle for a lot of people. You get the rebound headache being unaware that it’s caused by your medication so you take your medication to get rid of it. When the medication wears off and you get another headache you take it again, and on and on. I’m glad I know that now, it’s good to be as aware as possible with your pain and medication patterns. It also sheds light on the way painkillers sometimes make me feel.

I rambled much longer than I’d planned to. I just really wanted to share that with you, I might still be stuck in the rebound cycle if I hadn’t found out what it was. Though, knowing doesn’t make breaking it any less painful. Doctors and nurses never seem to think of that or know it themselves. If I tell them how bad my head hurts the first thing they say is “why haven’t you taken your medication” or “just take your medication”.

“The thing that is really hard, and really amazing, is giving up on being perfect and beginning the work of becoming yourself.” -Anna Quindlen

Duloxetine/Cymbalta

Cymbalta was the latest antidepressant (SNRI class) prescribed to me in the hopes of helping to manage my chronic pain. I’ll re-post the same thing I published a few posts ago about the motivation behind prescribing antidepressants to patients with chronic pain as my doctor explained it to me. She said that some people get defensive at the suggestion of antidepressants for pain as if the doctor thinks that the pain is in your head because your depressed or something but the truth is: “we know that you have this disorder, we know that the pain is in your ligaments and tissue and not in your head” but that after being in chronic pain for long periods of time your brain begins to overfire pain signals (as I’ve talked about before) and that the use of antidepressants is not to treat the root cause of the pain, – they don’t work for that – but instead to treat that amplification of the pain caused by your brain signals.

So with this thought and hope in mind I resigned to trying Cymbalta. However, I didn’t get far. Only two nights into taking the medication I once again began experiencing the very rare side effect of urinary retention. I could feel it becoming harder and harder for me to urinate and at one point, again, went almost twelve hours without going. Obviously this isn’t something you can just allow to happen so I ended up having to stop them almost as soon as I started. I was disappointed that I didn’t even really get to give them a shot, but also relieved that I didn’t have to struggle through the other side effects I inevitably saw coming. So, I can’t be of too much use to those trying Cymbalta for pain, I didn’t get much of the experience. 

{Any medical terms and/or definitions featured on this blog have been thoroughly researched by me as to not lead to any false consumption of information by the reader. Though, that aside; I am not a doctor and the medical information on this site should not be taken as a substitute for the advice of medical professionals. If you’re experiencing any health issues don’t hesitate to contact your doctor.}

Escitalopram/Cipralex

Sticking to my commitment to detail my past medication experiences this time I’m writing about the antidepressant (SSRI class) Cipralex. It’s been a year since I was briefly on Cipralex. My doctor wanted to try it on me because I’d been experiencing mild anxiety and restlessness. I only ended up being able to take it for about two weeks and I can’t remember much of my experience throughout that time except that it gave me upset stomach. I ended up needing to immediately stop taking it though, when I experienced a very rare side effect known as urinary retention. This is the inability to urinate. Not knowing that it would last or what was going on I went about 17 hours without going – not for lack of trying mind you – before it became unbearably painful and I was taken to the hospital. My bladder had to be drained via catheter. The nurse said that the bladder comfortably holds about 500 ml of urine – mine had 1200 ml – so you can imagine how painful it ended up being. By the time I got to the hospital I would’ve been up for anything to get rid of the pain. My doctor said I was the first patient she’d come across who had had that type of reaction to a medication in 20 years. Needless to say she also said she would never put me on any similar medications again.

{Any medical terms and/or definitions featured on this blog have been thoroughly researched by me as to not lead to any false consumption of information by the reader. Though, that aside; I am not a doctor and the medical information on this site should not be taken as a substitute for the advice of medical professionals. If you’re experiencing any health issues don’t hesitate to contact your doctor.}

Topiramate/Topamax

The first medication I’m going to blog about is Topomax. This is the last med that I tried. Like the rest before it I had to stop taking it because of the side effects.

I didn’t write them down at the time so I can’t remember them all but I can remember the ones that worried me the most.

Topamax is primarily an anticonvulsant used in the treatment of epilepsy but it also works for treating other things as well. I was put on it for my headaches as it’s been shown to improve migraines in some people.

During the time that I was on it I didn’t notice any improvement in my headaches. The longer I was on it the more side effects I noticed and the worse they got.

The side effect that prompted me to start researching was eye tracers. I had been noticing that when I would move my hand or look around quickly I would see doubles or tracers of things, most noticeably my hands. This worried me because of all the eye problems I have and I wasn’t aware that the medication could cause this problem so I began researching the symptom online. Then the name Topamax popped up on a forum with at least a dozen other people taking the medication who were experiencing the same thing.

Other unsettling symptoms included nerve pain. I began getting shock like sensations all over my body. They weren’t all that painful but they became constant and very uncomfortable. I also started getting a strong pulsing sensation in my stomach. Then one day I was playing cards with my mom and grandma and all of the sudden I got this extremely uncomfortable sensation throughout my body. It was like for a brief moment I couldn’t see or hear properly and then all of the sudden my legs went weak and I couldn’t think. I couldn’t take my turn because I couldn’t remember the game or what I was doing. The entire episode was very brief but it terrified me none the less. At the time I had thought that I just had some sort of mini stroke or something, These things were all a result of Topamax, which I later learned and once I was off of the medication (after talking to my doctor) all of the problems disappeared.

There’s a whole bunch of other symptoms that I forgot but when I remember I will add them. This isn’t meant to scared people or keep them from taking this medication. Everyone is different and will react differently. This is meant as a resource for people experiencing the same things and wondering why. I was extremely thankful that I was able to find this information when I was feeling in the dark and would like to pass it along.

{Any medical terms and/or definitions featured on this blog have been thoroughly researched by me as to not lead to any false consumption of information by the reader. Though, that aside; I am not a doctor and the medical information on this site should not be taken as a substitute for the advice of medical professionals. If you’re experiencing any health issues don’t hesitate to contact your doctor.}

Medications

Hey guys.

I’m going to cut a break in my hiatus by talking a bit about some of the medication I’ve been on and the side effects that they caused. For me it’s really hard sometimes when trying a new medication to tell if what I’m feeling is a result of the meds or if it’s just a part of my everyday not feeling good.

First off when your trying a new med I urge you to talk to your pharmacist with any concerns or questions. For a doctor to know every side effect from rare to common of every medication they prescribe would be impossible. Realizing that is important, that way you’re aware that putting blind faith in your doctor to know the exact effects your medication is going to have on you isn’t a good option, plus everyone is different and can respond differently. The pharmacists that I deal with are very friendly and willing to go over anything they know about the medications I’m getting. If you want you can call the pharmacy instead of going in.

Next, and this has been very important in my search for the right medications; listen to your body. If your body’s telling you something’s not right, then it probably isn’t. And even though I have never done so (I really wish that I had now) it’s also really helpful to record a log of any new symptoms you start experiencing with your medication as well as the name and dosage. Seeing changes written down helps keep track and be aware of just how your feeling, when, and what seems to cause it.

I’ve never responded well to medication. They rarely have the intended effect and always have the worst of side effects. I’ve hardly ever been able to stick to a medication whether it be pain killers or anti depressants or anything else.

The last new medication I was placed on for my headaches was causing me extreme side effects a few weeks into taking it. They were subtle at first but quickly became more and more worrisome. What my doctor thought was anxiety was actually the effects of the medication. The only thing that helped me was the internet. I looked up a new frightening symptom and low and behold the name of the new medication popped up along with a list of all of the other symptoms I was experiencing.

Now every time I start a new med the first thing I do is research it. Not to second guess my doctor but to be aware of the things that might go on and to not be frightened by them.

I’ve decided to start writing about the medications I’ve been on (at least the ones I remember) and my experiences with them. I’m doing so for others wishing to research as well as for me to be able to look back and remember the details. I’ll make a specific category for them so that they’re easy to find.