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 thousand thoughts, a hundred questions.

The glass is half empty today and I’m about to vent, so readers beware.

I woke up today with such a heaviness in the pit of my stomach. The pain in my back, piercing and ever constant, was a quick reminder of the body I’d be spending the day in. Yes, it’s one of those days, when the reality of your situation hits you like a ton of bricks and it’s hard to even draw breath. The popping and grinding in my hip quickly reminded me not to move so carelessly, lest I not be able to move at all.

I would’ve crawled right back under the covers and told this day to leave me alone if it weren’t for the unavoidable; I was hurting too much to stay there anymore. When these days come I do my best to pass the time without letting my mind wander too far into the future. That’s where the paralyzing fear of my reality lurks. The most terrifying question of all when it comes to my body and the condition it’s in now: is this the best it’s ever going to be? And the answer is yes, because my disorder is degenerative. My body’s falling apart, not coming together. And this, most unbearable and painful of days, is one of the better, more tolerable ones I’m ever going to have.

How do I swallow that? I can’t, so I set it aside while my mind reads through the overwhelming amount of scenarios in my head; How am I going to live with this pain? Do I take more ibuprofen? What about the damage it’s doing to my stomach? After all I’m only 20, I need it to last me a long time yet. Do I take some more Tylenol? But what about my kidneys…they already deal with so much medication as it is. I already took my pain medication for today, it helped a bit but it’s nearly worn off now and the day is hardly 1/4 through. Do I take it again to make it through the day and then suffer another day for not having enough? I don’t even want to be on pain medication everyday but even when I am I’m barely coping. What happens when my tolerance is too high? What happens with the rebound headaches and other repercussions of pain medication? What happens when I can’t even remember what it feels like to think like myself, because pain and medication have dulled my mind for so long?

These are just some of the questions that play on repeat in my head all day. Every decision I make, every second of pain or sickness. The biggest one being; what’s going to happen to me? But, that’s beyond my control so I try to stay in the now. And right now I’m in too much pain, in too many different places. And so, as much as it breaks my heart and makes me sad, I think it’s time to talk to my doctor about upping my pain medication.

I’m going to talk to the neurologist about a treatment for my spine but that appointment is six long months away. Even then I don’t know if he’s going to know what to do with such a rare problem and complex disorder or if he’s going to put me on another long waiting list for a different specialist.

I never thought that I’d long for the days when my ribs and headaches were the height of my pain problems. Back then I never would’ve believed – not for a second – that was as good as it was ever going to be. It makes me realize the importance of hope and how endless the journey can seem when it’s taken away by words like “incurable” and “degenerative”.

Wilted by Hanna Pritchett

Thanks for tolerating the venting, as always.
Hugs xx

It’s Thursday already?

Finally, an update! How is it that the days seem to drag on forever yet at the same time they’re going by so ridiculously fast? I had meant to do an update last week!

I’ve been feeling rather introspective, perhaps it’s a day for it because my good friend Benjamin seems to be feeling the same way! Actually, I’m rather moody as of late. I fear that I’m slipping back into one of my major depressive episodes. The holiday season seems to only be making it worse. I think that I’m still harboring sadness and anxiety over how last Christmas turned out. It seems like I have a hard time letting emotional pain go. The more sadness that creeps it’s way in the more I find some painful memories stealing their way into my thoughts along with it. I wish that I could be numb to both the physical and emotional sometimes, that I could forget some things that have happened. Life would be so much easier that way.

Knowing that I might be falling back into a major depression but not being able to stop it is terrifying. And, I wish that it wasn’t happening around Christmas, I don’t want to ruin the joy of it for the people that I love. It’s times like these that I wish I could be medicated for the depression. Even with the awful side effects and conflict over putting toxins into my body, I just want to get better. But, thanks to the urinary retention side effect that’s not even an option anymore.

Painwise, I could be doing better. My hip subluxated about a week ago. It went back into place fairly quickly but it’s been really sore ever since. My tailbone is also dislocated again. I’ve been looking into the tailbone removal surgery, but it sounds like it’s one of those gambling decisions where you might just end up worse off than you already were. And, with my tissue disorder, I think it’s best not to mess around with surgery unless it’s straightforward and 100% necessary. Besides, I’ve been dealing with the tailbone dislocations for as long as I can remember. They’re getting more frequent and they’re painful but I can manage them. 

I found out today that I’ve been approved for an appointment with one of the best orthopedic specialists in our province. It’ll likely be in mid March at the Children’s Hospital. We’re going to line it up so that it coincides with my echo there for the Marfan/Loeys-Dietz clinical study my pediatric cardiologist is doing as well as my appointment with my new “adult” cardiologist. Two echos in a matter of days isn’t ideal, they’re very painful because of my rib problems, not to mention that doing two of the exact same tests seems a little pointless but we have to attend our appointment with my new cardiologist within a year of the referral or the process has to be redone. I’m nervous about meet two new doctors. I’m always afraid that they’re going to be jerks, but I’m hoping because one is a highly recommended specialist and the other works with children for a living that it’ll turn out okay.

Winter by Dieter Thau

I hope that all of you are doing well tonight and that you’re enjoying your holiday season!

To Kill The Pain

Pain killers are something that none of us ever want to have to rely on steadily for relief. But whether we want to or not, for some of us it’s the only way we can up our quality of life. Everyone’s got an opinion on them. A lot of those opinions are negative. If you think about it, we don’t want to be damaging our bodies for relief either, but sometimes it’s the only option we can handle. Personally I think that no one should have an opinion on how chronic pain is treated until they’ve suffered from it.

Today for example, an episode of Dr. Oz was focused on medical marijuana and whether it should really be legal or not. There were people arguing against it who had never even suffered from any chronic pain. They say it’s addictive; so are narcotics, they say it’s bad for you; so are narcotics. There’s nothing marijuana will do to your body that’s any worse than what many of the pain killers already proscribed to those in chronic pain do. As Montel Williams stated on the show, how does someone without pain have the right to deny us as much?

 Clearly I’m on the pro end of the medical marijuana spectrum. I live in chronic pain as well as having family members who suffer from it and one who uses MMJ to decrease the effects of multiple sclerosis. However, though I do realize people have a right to their opinions I also think that they can’t have an accurate one if they haven’t experienced what it is like to actually need the drug.

I don’t personally use the drug, it doesn’t seem to work for my particular type of pain, but for so many people it is the only relief that they get. Whether it’s legal or not it’s already possible to purchase so why not just allow those who really need it to use it.

I’ve tried many different medications for my chronic pain, from amitriptyline to codeine to dilaudid and many in between. None of which seem to work for me. The only thing that offers any relief is Tylenol 3 (a combination of acetaminophen, codeine and caffeine) and sometimes that hardly does a thing even when two are taken at once. It’s a hard thing to do when you know of the effects that these drugs can potentially have on your body when used long-term, but when you’re in so much pain that you can’t think or function then all of that seems less relevant.

I wish I could be one of those healthy people who can say “nay” to medications. But my quality of life would be lower if I did. They may not always work but when they do it makes it that much easier to get by.