My Story, Part 2: Xyrem, anti-depressants, Provigil (again) and Concerta

 

When we left off in part one, I was only taking Concerta.  This post continues my story, especially as far as medications are concerned.

By the summer after my junior year, I was feeling really tired again and my doctor recommended I try Xyrem.

I was initially reluctant to try it because it sounded so scary (you want to prescribe me GHB, the date rape drug?!!), but my doctor convinced me to give it a shot – and I was sleepy enough to try anything he thought might help. 

At first, Xyrem worked well for me: I slept much better at night and felt much more awake during the day, although I still needed to take my Concerta and naps.

Unfortunately, I soon developed major side effects that led me to question being on Xyrem.  About 6 weeks or so after starting Xyrem, I developed strange stomach and bladder issues.   

Every day, I would wake up in the morning, get up, and be overcome with nausea, throwing up nothing.  As long as I did that each morning, I would generally be okay as long as I didn’t eat anything before noon.

I also had weird issues with bladder retention.  I needed to urinate extremely frequently, yet even after going to the bathroom I would often still feel like I needed to urinate.  You can imagine that this was highly annoying, and it took me some time before I figured out for sure that this was a side effect of Xyrem.  (I originally thought I had some sort of bladder issue and the college nurse’s office gave me some drugs, but I eventually realized it was just the Xyrem and nothing else).

As bad as these two side effects were, I was willing to put up with them in order to sleep well at night and feel awake during the day.  It wasn’t until February, when I decided to stop Xyrem to make sure it was causing these issues, that I suspected that I had two far more serious side effects: depression and anxiety. 

When I stopped taking the Xyrem, the stomach and bladder issues went away, but after 4 days I also felt like a different person.  It was like this giant black cloud of sadness and pessimism and worry was lifted off my shoulders.  Suddenly, I felt happy again.  I didn’t have to check that the door was locked three or four times.  Sure, I had problems, but I could deal with them instead of feeling things were hopeless.  I probably had minor depression and anxiety without Xyrem (although never diagnosed), but on it I was miserable.

Convinced that the Xyrem was causing serious psychological problems for me, I decided to stop taking it, only to go back on it one or two months later.  I felt better psychologically without the Xyrem, but off of it I struggled to stay out of bed, and my schoolwork was suffering.  With one month to finish my honors thesis and study for exams before graduation, I went back on it.  As I saw it, I didn’t have any choice – I had to get this work done and I was too sleepy to do it.

Once again on Xyrem, I finished my honors thesis and exams and graduated from college.  However, I didn’t even think about going off Xyrem.  Now that the pressure of school was over, the pressure to get a job was on.  It didn’t occur to me that I was once again depressed and anxious because of the Xyrem, and clearly I needed to be awake for my job search.  (Besides, when is there ever a good time to feel really really sleepy, right?)

I had forgotten what it was like to be off Xyrem, except as far as the sleepiness was concerned.  Unfortunately, I couldn’t see why I should get off of the drug until months later when my life was turned upside down. 

This was the problem with these psychological side effects: When I was on Xyrem, I would think, this (how I’m feeling psychologically) is just me!  These are MY negative depressed and anxious thoughts, after all, and of course I am miserable, it’s entirely logical – I have so many problems and anyone can see that I’m completely hopeless! 

Whereas off the Xyrem, I still had the problems, I just wasn’t overwhelmed by them, crying in bed and having trouble dealing with life.  (This is probably the best explanation why I kept going back on Xyrem even after I “knew” the associated side effects: while the other two side effects from Xyrem and the sleepiness I felt off the drug were obvious, it was hard for me to see the depression and anxiety as side effects because they became inseparable from ME.  Nausea and bladder issues were clearly side effects/problems, but it was more difficult for me to see the situation clearly when it was my THOUGHTS that were affected.)

So instead of stopping Xyrem after finishing my thesis, as I had planned, I made a big mistake: five days after graduation, still on Xyrem, I was offered a job in NYC – and I took it.  It wasn’t really what I wanted to do and I didn’t love it, but I was convinced that I had to have a job the second I graduated – and here I was already 5 days after graduation and this was my first job offer. 

I didn’t feel that I had any choice but to take it.  So I did. 

It was a doomed combination from the start.  To start, the job was a terrible match for me.  I hated the job, it wasn’t the sort of thing I was especially good at, and on top of that a bunch of things about it were a mess.  However, I probably could have dealt with it had I not been struggling with serious depression and anxiety, not to mention the loneliness of moving alone to a big city.

In a job that consisted primarily of bringing various giant folders from department to department as fast as possible, my anxiety was evident, and I had a hard time hiding my depression and insecurity.  (It seems ironic now – here I was working in a pharmaceutical ad agency for teams designing ads for anti-depressants while I suffered from depression myself.)  

After less than a month, I was fired, which came as a shock to me.  I had never lost a job, and I was devastated, although I was somewhat relieved to leave because I had been so miserable.

Having lost my job, I moved back in with my longtime boyfriend/now husband (who I had lived with before I moved away for the job).  I finally decided that I really had to do something about the Xyrem and my depression and anxiety, and unemployed, I had the time to do it.

Thus began a number of months of sleepiness and trying new medications.  I went on and off Xyrem a few times over the course of the month, still hoping that I was wrong about Xyrem causing  the anxiety and depression.  Although my doctor originally thought the Xyrem wasn’t causing my problems, I soon became firmly convinced.  As I figured it, it took four days on Xyrem to make me feel seriously depressed and anxious and four days off of it to make me feel okay.  (Yes, I went on and off of it enough times to know the number of days.)

To make a long story short, I proceeded to try a number of antidepressants and anxiety drugs to counteract the Xyrem side effects – including (but not limited to) Effexor, Proxac, and Wellbutrin – before giving up and deciding to get off the Xyrem in August (2006).  None of the drugs I tried both helped and didn’t have terrible side effects (namely, headaches). 

It was pure trial and error, and I was tired of trying a different medication every two weeks only to still feel badly.

All of this medication changing was proving hard to do long-distance, so I switched to a sleep doctor near me in Pennsylvania, hoping that seeing someone in person would make a difference.  (It didn’t really help, but it sounded like a good idea.)

Upon the insistence of my doctor, I tried taking a high dose of Provigil (I think it was 600 mg) plus my Concerta, even though I had previously tried Provigil without it being much help.  I was right: it didn’t help my sleepiness, I felt “foggy” and had weird vision issues, plus it gave me terrible headaches.

In the end, I ended up just taking the Concerta, but increasing my dose to 90 mg (54 in the morning and 36 at 3 pm).  This was a very high dose, but my doctor was okay with it so long as I didn’t do this long term.  Having messed around with so many meds for so many months, a solution that worked for a few years was fine with me.  I was sick of playing this med changing game.

About a year and a half ago, I reduced my Concerta dosage because I didn’t think the higher dose was helping me much.  First I cut my afternoon dosage (which is less important to me than the morning one) to 18 mg and then many months later moved back to taking just 36 mg in the morning.

Although I feel more tired than I would like to be and do not sleep well at night, I have come to accept that taking Concerta is my best bet for now.  Unfortunately, I have not come up with a better option as far as medication goes.  I still have not tried the higher class of stimulants, having decided against this because I have read that they have many more side effects.  I also suspect that it might be difficult to get a doctor here to prescribe them, as for some weird reason sleep, sleep doctors here in Germany don’t normally prescribe traditional stimulants for Narcoleptics (only Provigil and Xyrem).  As it is, my prescription for Concerta falls under “off the label use.”  We’ll see, perhaps I will look into trying one of these some time in the future. 

Knowing that I am stuck with my current treatment regimen for the time being, I am constantly looking for ways to make changes to feel more awake and have more energy.  I find that a lot of things affect my alertness other than medications and my naps, and I continue to search for better ways to cope with Narcolepsy.

You might say this blog is a reflection of my efforts, as if I had found my own personal Narcolepsy “miracle drug,” I expect that I would have a lot less to write about.  In fact, I’m not sure that I would even be writing this blog…

Thoughts? Questions?  Comments?

Thanks for listening!