There’s this screaming in my ear…

My sensors are so unbelievably overloaded, I’m surprised at myself for even offering up the effort that it’s taking to blog this right now. When you’re in pain it’s like having someone beside you, shouting in your ear while you try and process information. It becomes sadly difficult to do things that should be very simple, like listening in conversation – anything you’ve said will most likely not be remembered if I’m in very much pain.  This does make me feel bad, I think that it’s easy for people to interpret my inability to concentrate because of the pain as being a disinterest in them, or what they’re telling me. This is definitely not my intention but it is impossible to do otherwise at times.

When I have an awful headache, like now, I get this unintentional scowl and squint eyed look – all of my face muscles become tense, especially the eyebrow and forehead ones, partly in response to the entire pain itself and partly because looking around hurts. I try my hardest to relax these muscles, knowing that tension can only make the pain worse, but I find that I have to remind myself every few seconds. I found these amazing sunglasses the other day – not style-wise – but because they are super dark, almost too dark to be of any use but when a nasty headache occurs.

My mom and I had to drive to the next town over for one of her doctor appointments today. Well, I came in case she needed me to drive, but in the long run my pain got so bad that I couldn’t anyways – not safely at least. Being in the car is terrible for me pain wise, not to mention the fact that my height makes everything far less roomier than it would for those of average height. The drive is only about an hour and fifteen minutes each way, but that was plenty enough for the both of us. We’ve both been at home recuperating ever since. I find myself again being reminded of the harsh truth in the spoon theory, that a 19 year old can be so physically wrecked by a 2 and a half hour car ride. It’s ironic to think that my grandma fairs so much better than I do while taking on a much larger load, daily.

I’m finding myself in a good mood despite the above. I have much to be thankful for today, starting with the fact that my mom’s appointment went well and we received not an ounce of bad news. I have my own doctor appointment in two days. I want to ask her if there’s something that can be done for the spine pain, a nerve block or something, because what’s being done now isn’t working. My quality of life has been steadily declining very much in large part because of the back pain. I’m terrified of the answer I’ll receive to that question so I’ve been declining to think about it, I’ll find out soon enough anyways.

I had planned to use my camera somewhere along the beautiful drive today but that didn’t quite turn out to be as much road trip fun as I had hoped. So, instead I decided to post a few more from our Ottawa pain summit trip.

The parliament buildings are covered in stone carvings like this one, the detail and sheer man-hours put into them is incredible. I found this one to be the most humorous, perhaps unintentionally. Though, I can’t really see someone carving this out without having a laugh.

This is maybe 1/16th of one of the parliament buildings. I felt like I needed to hire a crane to lift me up so I could take pictures of them properly. They are huge. They were such a sight to see.

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

Headaches: I Hate Thee

The morning after taking my last Cymbalta (the previous night) I woke up with a bad headache, nothing too out of the ordinary. Usually I take my painkillers before it gets too out of control because once it’s really bad it’s also much harder to treat, but because my bladder was still troubled from the Cymbalta I tried not to risk taking anything for as long as possible because narcotics can also cause urinary retention in some people. I usually take two Tylenol 3s (Tylenol, codeine, caffeine) and two muscle relaxers for the headaches. Trying to keep my use of painkillers as sporadic as possible I only take them when the headaches are getting beyond my ability to tolerate, but because of the urinary retention I was advised by the pharmacist to absolutely refrain from taking any muscle relaxers. The Tylenol 3 only really ever just takes the edge off of a nasty headache but without the muscle relaxers it does nothing at all. So, instead I was told to take 4mg of my Dilaudid, hoping that it wouldn’t affect my bladder. It did the trick on my headache for a while and allowed me to relax a bit but when it wore off my headache began to slowly return with a vengeance. Whether this was what some doctors refer to as a ‘rebound headache‘ – a headache made worse by the use of narcotics one they’ve worn off – or just a coincidence the pain eventually consumed my every thought completely. Sleeping was impossible, reading, television, computer were all out of the question. It was all I could do to gently pace or rock back in forth in a feeble attempt to distract my mind in the slightest. I couldn’t take any painkillers again, aside from the fear that I was in fact suffering from a rebound headache made worse by taking anything in the first place, the Dilaudid also made me unable to urinate for 11 hours. I knew any more of it and I’d be in the hospital with a catheter again. The headache was one sided, extending from the back all the way into the front. The worst of it was in my ear and eye. Every time I had to cough or get up it felt like my head was literally going to throb to the point of explosion. Eventually at around 6:30 in the morning I couldn’t take it and ended up in the hospital. At that point I would’ve volunteered without hesitation for a catheter if they’d be able to give me something for the pain, one of the nurses even suggested it. But instead after a quick exam the doctor had mr injected with a medication specifically for migraines. I had low hopes for it working but to my surprise by an hour afterward the pain was significantly reduced to the point that I felt somewhat like a human being again. I was in too much pain to really register much of what was said to me at the hospital so I intend to ask my doctor what medication I was given next time I’m in to see her.

My headaches have been relentless since then. I’m exhausted and becoming increasingly depressed by the amount of pain I’ve been in lately. I’ve always been extremely aware of the negative impact of narcotics on the body, how over time they can increase your pain levels, how quickly you’re body begins to tolerate them and how you’ll eventually need more and more to achieve the same effect. For the 4 or so years that I’ve been on them I’ve made it a point to do my best to keep my use of them minimal. I think it would be harder to do if they worked better on me, but even the modest amount of relief they offer is tempting even on a good day. I only take them on average about 2 or 3 times a week. Sometimes I take them a few days in a row during a bad spell, sometimes I go a few weeks with nothing during the good. I keep a journal detailing my use of them, this way I feel more aware of my habits and even of the pattern that my pain sometimes fluctuates in. Narcotic use is a slippery slope and though I’ve never been tempted in the least to use them recreation-ally I’m also not naive enough to think myself invincible to addiction. That’s why I take precautions, I’m still only 18 and I’ve got a long way to go in life. It is known that those who actually use these types of medications for pain are less prone to fall into addiction but even so it’s not impossible.

Q: “Always fall in with what you’re asked to accept. Take what is given, and make it over your way. My aim in life has always been to hold my own with whatever’s going. Not against: with.” – Robert Frost

{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.}

A Constant Headache, Literally

I think now’s a good time to explain a bit about these headaches I’ve been getting for the past couple years.

I get them to some degree every single day – so in other words I haven’t had a day without a headache for a long, long time. This has been a major challenge to live with. The pain they cause can be so consuming and make it so hard to function. They are virtually unresponsive to every medication or remedy that I try; heat bags, massages, lying down, sitting up, hot showers – none of them help. The only thing that I find will ever touch these headaches are 2 Tylenol 3s and some muscle relaxers. Even those things often won’t work and when they do they offer very moderate to minimal relief.

The headaches are hard to pin to a specific category. Sometimes they are clearly migraine headaches – unilateral, throbbing, nausea – but my more usual headaches are a bit of a mix between a tension, migraine and cluster headache. It feels like my skull is too full at times, like it’s being crushed or pressed on. Sometimes it throbs to the point where I can’t stand up without it putting me in agony. It can radiate into my temples and eyes and can make me very sensitive to light and sound. For the most part it is always to some degree in the base of my skull right above my neck, this part of the headache is the constant. They also affect my jaw; the worse my headache gets the more my jaw pops and cracks. I know TMJ can cause headaches but I’m not sure what or even if there’s a connection in my case.

Sometimes the headaches are so extreme that I find myself wishing that I didn’t exist. I just sit there rocking back and forth or fidgeting, trying to escape from it. But when they get that bad there is no escaping. If it’s a fairly bad headache and I’m tired I find covering my head with heat bags and laying down on my stomach to be comforting. It may not help the pain but the heat is still soothing and distracting. Sometimes I’m lucky enough to be able to fall asleep like this and wake up feeling a bit better. Other times I’ll wake up in even more pain.

I think overall this is one of if not the most disruptive aspects of my disorder. It keeps me from doing much and makes me feel pretty useless. I’m always looking for input from those who suffer from headaches; what type of headache? What, if anything helps it? What makes it worse?