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 opioids 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 meds. 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. It’s dangerously reckless, 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. 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 “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.