Dissonance

My recent bout of insomnia, that I relate to the anxiety and change of routine caused by my master’s classes, has been met with skepticism from everyone from my mother to my therapist. I see them frown and ask, “Couldn’t this have something to do with Tecfidera?”

The taking of the full dose of Tecfidera coincided precisely with the beginning of my classes, so there was really no way to be sure unless I talked to my neuro, but I know deep inside in my gut that these past two months of insomnia have everything to do with anxiety originated by classes. Because I feel anxious, that restless feeling inside my chest that is so familiar. Because when I wake up in the middle of the night is usually due to some nightmare. Because I’ve been living with myself for the past 33 years. Continue reading

Treating Your MS: A User’s Guide to Multiple Sclerosis Medications

Treating your MS HR_book cover jpeg-2I mentioned in my previous post that I wouldn’t be reading non-fiction for a while. However, since I’m in between drugs at the moment and this book came out a little over a month ago, I thought the timing was perfect.

I haven’t been taking anything for MS since February, and right now what I’m going to take next remains a huge question mark. I started on Avonex when I was diagnosed but soon it became clear that interferons are a big no for me due to side effects. I moved to Copaxone but disease progression as seen on MRI made doctors consider other possibilities. Continue reading

The chicken and the egg

So, which came first? Depression or fatigue? Am I depressed because I’m always tired due to MS and can’t realize my potential, or am I tired because it is one of the symptoms of depression?

I barely remember what it’s like to not be tired. When I was 18 I had glandular fever for two weeks. The blood tests came back positive for the Epstein-Barr virus (which is suspected to be connected with MS) and for at least six months after the fever my antibody count remained high. That was the first time I experienced severe fatigue. I lost a lot of weight. I did recover, but I remember telling a friend a year or two later that I had never felt the same after that, like the fatigue mono brought with it had never left me.

On the other hand I thought fatigue was normal because I suffered from insomnia. I remember when I was 15, roughly a year after I experienced being depressed for the first time, waking up in the middle of the night and not being able to fall back to sleep. This pattern remains the same to date. If I wake up, either due to a nightmare, noise, light or even for no apparent reason, unless I’m medicated, I probably won’t sleep. This began at 15 and only at 28, after years of trying everything you can possibly imagine, I went to see a psychiatrist and started taking meds.

With those meds my sleep became sound. But around six months later I noticed that, even sleeping like a baby, I would still wake up tired. That was the first time it occurred to me that something could be really wrong. But I didn’t have to dwell on that thought for long because months later I was diagnosed with MS and told fatigue is one of the main symptoms of this condition.

So I’m confused. Depression can cause insomnia and fatigue. Insomnia obviously causes fatigue. MS causes fatigue. And fatigue, in turn, can cause depression. MS drugs can also cause depression. Antidepressants can leave you groggy and with no energy. All these intertwine. And as much as I try to trace back bits and pieces of my life in search for clues, memories fade – and are not so reliable.

I stopped taking fluoxetine this weekend and I immediately noticed a difference in my sleep, as it is lighter. But today I started taking my first prescribed drug for fatigue, amantadine. My MS specialist prescribed it a couple of years ago but I never tried it because I was taking so many meds at the time I worried about possible interactions. I hope I will be able in a few weeks time to tell what it feels like to not treat depression and treat fatigue instead. Will there be any difference?

In the meantime I will be spending January tying loose ends from 2014, including college (only a month to finish my final paper!) and the switch from Copaxone to Tysabri (how hard can it be? Apparently very hard for the NHS).

I wish you all a very good year, with good health on top of all. 🙂

Guinea pigs have feelings too

One thing psychiatry and neurology have in common is that patients get medicated by trial and error. I was diagnosed with MS three years ago and I’m about to try my third treatment (I’m hardcore like that). And since I stepped into a psychiatrist’s office for the first time four years ago, I have tried many different drugs, some more effective than others.

Doctors look at you, listen to your symptoms, look at your tests, and still have no way to predict if a given treatment is going to work for you or not. That leaves patients sometimes feeling like guinea pigs. And oh well, guinea pigs get tired of trying too. This particular guinea pig suffers from chronic fatigue that is physical, mental and emotional. Every day this guinea pig goes home feeling like it just completed the Olympics. And after all these years exhaustion is getting the better of it.

I called my psychiatrist earlier this week because fluoxetine is making me feel even worse than I was, and she decided to switch me to paroxetine. Reading about it online, it seemed to me more of the same. So is it even worth trying?

I wondered – what would happen if I just stopped?

And do I really want to know? 

I’m currently discontinuing fluoxetine according to my psychiatrist’s treatment plan, but I haven’t picked up paroxetine yet and I’m not sure I will. I’ll see how this goes.

More medication changes?

I saw my psychiatrist today and I obviously had to update her on the latest developments about my health. So from there we started talking about what this all means in terms of my mood and sleep. I haven’t been sleeping well since those steroid infusions, but I’m confident my sleep will be back to usual patterns as soon as the steroids wear off, which, according to my neurologist (and my weird nights) hasn’t happened yet. So for now I’m going to keep taking trazodone at night.

Now for my morning pill. I’ve been taking escitalopram for some time and I’m quite happy with it. In fact, about a year ago, when I felt better and more stable and suggested my psychiatrist should take me off of it and see what happens, what happened was I stopped sleeping again. Escitalopram, being an antidepressant designed to treat anxiety as well, has been doing wonders for my insomnia, which has a lot to do with anxiety.

However, I haven’t been feeling anxious lately. At all. Instead, I’ve been dealing with everything by hiding from the rest of the world, feeling demotivated and generally more sad. So she thinks it might be a good idea to try something more uplifting, as in fluoxetine. That is, Prozac. Oh dear. 😦

Aftermath of a relapse: medication changes

So the results of my MRI came in yesterday and, as suspected, things aren’t looking so good. In the two years since my last MRI I have six new lesions, older ones have grown, and there was the inflammation in my optic nerve. This means my neurologist wants me to change medication fast. A “therapeutic escalation,” she calls it. And, for once, I agree with her.

I’ve always resisted moving up to the second-line treatments because of their risks. My first experience with disease-modifying drugs was with Avonex, an interferon, and that was a nightmare. Even though the injections were weekly, the flu-like side effects were unbearable. I took Avonex for ten months and there was no paracetamol that could help prevent the fever and the horrible muscle soreness that came with it. But that wasn’t the worst. Blood tests revealed my liver enzymes were high, my thyroid was malfunctioning, and the MRIs showed the disease was progressing. So in November 2012 I changed to Copaxone.

At first I was worried about the skin reactions Copaxone is most famous for. I had seen pictures on the internet, and knowing how sensitive my skin is I never thought I would make it. But fortunately I got along with it well. Never had any major issues and even ended up getting used to the daily injections and carrying them around with me in ice pads when I went away. It was a nice relationship that I didn’t want to quit, but my MS is unfortunately stronger than Copaxone.

So now I have to consider my options. There are no more first-line therapies available, unless I’m willing to wait for Tecfidera. At the hospital they told me more six months before it becomes available, but I’m not sure I trust that estimate. Tecfidera was supposed to be approved in 2014 and now they’re pushing it to 2015. That leaves me with Tysabri and Gilenya. They’re both much more aggressive drugs. More efficient, for sure, but also with more risks and side effects. They’re also newer. While interferons and Copaxone have been around for almost 20 years, these two are much more recent, which means risks in the long run are not fully evaluated yet. Am I scared? Yes, I am, but maybe it’s time I start taking more risks. And not because I don’t feel fine. Right now I feel like I could train for the marathon, have a baby, start a family, write a thesis, go on adventures and marvelous vacations. But at the pace the disease is progressing, how am I going to be in ten years time? I have to consider that carefully instead of relying on how I am feeling in the present.

Luckily, people on Twitter have given me great feedback on both Tysabri and Gilenya. It feels encouraging to know that they are responding well to the therapies with no major problems. I have to hold on to that. I also hold on to the countless studies that are published every month about multiple sclerosis. There are a lot of avenues open to explore, from creating vaccines to the viruses that may be connected to the disease, to investigating the leaky gut syndrome, developing remyelination drugs, discovering mechanisms to switch off autoimmune conditions, plus all the buzz about stem cells… There is a lot going on and I believe the pieces of the puzzle will come together and it will all bear fruit sooner than later.

Meanwhile, my IV treatments are over and my symptoms improved, though I’m still not seeing totally clear. My neurologist said that it could still take around three weeks for the methylprednisolone to fully do its job. During these three weeks I will be thinking about Tysabri and Gilenya so we can discuss it further when I see her again in the beginning of October. I hope the side effects of the steroids will pass, as I’m feeling accelerated and having a hard time sleeping. My blood pressure is bungee jumping and my heart racing. This is all normal, but still annoying.

Now it’s time to put my life back on its tracks after this interruption. Today is college night and tomorrow I’ll go back to work. I’m hoping I can see my girl friends next weekend and talk about frivolous stuff and forget about diseases. I do have a lot swirling in my head. After something like this you can’t help evaluating your life all over again and wonder about the future, about your dreams, daydreams and objectives. Oh, and the conflicts. This relapse reminded me of what is wrong with some of my relationships and is giving me an opportunity to look at so many latent conflicts. But I will leave all that for another post. Right now I’m going to get some air.