Balancing Act: Symptom Management and Medication Side-Effects

balance

It has been weeks since I’ve posted anything of substance about my own condition.  The winter has been long and dark.  I’ve felt largely unmotivated and unproductive after work, not making time to do much else besides cook dinner for the family and spend some time with them before using the last hour and a half until bedtime to fight off sleep while watching TV.  I lack the balance that is present in the photograph above.  Instead, I feel I have been pushed and have broken into thousands of pieces.

Looking back on the winter, Christmas was excellent, though I started to get a little down about things that I did not accomplish in 2012. The New Year felt less promising than in years past.  I started to notice that I was feeling a lot more melancholy than usual. I was stressing about everything to the point where I was getting stressed about being so stressed.  I felt anxious quite often, especially in the morning. I flipped through my journal and noticed it worsened through the fall into winter after being on Xyrem since May. I was also complaining of being sleepy more often.  My weight wasn’t stabilizing despite being on Xyrem for several months, so I wasn’t able to run or do much in the way of exercising at all.  I felt like I was at risk of having a major meltdown.  It became depressing.  I felt like I was losing myself and letting this disorder take over my life.

During the second or third week of January, I had an appointment with the sleep doctor who prescribed Provigil since I said I was still struggling with excessive daytime sleepiness.  He cautioned me about losing any more weight, as if that would suddenly bring back my appetite. I completely forgot to mention the anxiety, other than he did ask how work was going and I said it was a bit stressful at the moment.  (I’m in IT; it’s almost always stressful to an extent!) I walked out of there feeling as if there really were very few alternatives for me and hoped the Provigil would work.

The Provigil worked a little, though the anxiety suddenly skyrocketed.  I called the doctor again, and he added an SSRI to the medication buffet. While I slept wonderfully on the SSRI/Xyrem combo, I continued to feel more and more anxious and stressed about every little thing.  I was also starting to have a complete aversion to food.  Trying to eat breakfast in the morning was impossible as anything entering my mouth – even my toothbrush – made me start gagging.  If I actually managed to swallow food, it came back up.  There was also the nausea and diarrhea to contend with.  It was a most unpleasant time.

I was also diagnosed with mild gastroparesis in January, meaning my stomach wasn’t emptying as quickly as it should.  Symptoms of gastroparesis include nausea, vomiting, weight loss, and premature fullness while/after eating.  Gastroparesis can be caused by some medications.  Faced with the clues from my journal and the development of more problems potentially caused by the addition of Xyrem, I began to consider going off of the Xyrem.  Still, my husband and my doctor’s nurse encouraged me to keep trying the SSRI/Xyrem combination for a few more days to see if my new round of side-effects would taper off.

On February 3rd I stepped on the scale and weighed exactly 100 pounds.  (It’s a good thing I’m only 5’1” or this would be even more devastating.)  Shocked and frustrated to tears, I decided that I was done with the SSRI (it was only day 4 or 5, but that was enough for me).  I did not want to see anything below 100 pounds on that scale.  (I did the next week, unfortunately, but I’ve come back up a couple of pounds.)  I posted in one of the Facebook groups about my predicament.  A couple of PWN suggested that I should have tried a decrease in Xyrem dose before adding the SSRI.  Since many of them have been in the fight longer than I have, I trusted their advice and dropped each dose by half of a gram.  After about a week, I noticed my appetite coming back.  Eating slowly became enjoyable again.  A few weeks later, I noticed less gastric pain and that I don’t feel uncomfortably full after eating.  The anxiety levels have come down to almost pre-Xyrem levels. With that being said, I’m not sleeping as well.  The excessive daytime sleepiness is a little worse as a result.  However, I’m much more comfortable with sleepiness than I am with feeling as awful as I was on the higher dose.  I’ve attempted to go up even just .25 gram on one dose, but after a few days, I start losing my appetite again.

I think finding some sort of balance between the side-effects from medications and symptom management is a commonly overlooked struggle for people with chronic illnesses. After all, it didn’t cross my mind when I was first diagnosed, and I’ve heard the same from others.  I did not anticipate this part of living with narcolepsy.  I figured I would quickly find a medication regimen that would work, and I’d be on my way back to being “normal.”  I did not consider the possibility that I would be closing in on 18 months of being on some sort of treatment plan with only partial success.   I’m sure the general public and even family members think about the possibility of not making drastic improvements with medications even less.  It makes me wonder how family members of PWN in similar situations feel.  Do they get frustrated because there is no further improvement?  Do they think the PWN isn’t trying hard enough?  I’m thankful that I’m sleeping a little better at night and that I’m having fewer major cataplexy attacks, yet I cannot help but feel a little envious when I hear about those who no longer rely on naps and/or stimulants throughout the day and haven’t had all of the side-effects like me. I should not compare myself against anyone but myself at prior times, yet I am human.

With spring fast approaching and my weight stabilizing, I’m looking forward to being able to run more often.  I have a hunch that my fatigue will improve greatly once I’m exercising more regularly again.  Perhaps then I will feel like I’ve achieved a better balance and feel whole again.

How are YOU doing?  Do you feel you have to sacrifice feeling good to make sure you’re awake enough to function or sacrifice feeling awake to feel healthy?

Comments

  1. Jenni says:

    It is nice to read that I am not alone in my struggles. I started xyrem like 2 years ago and have had appetite problems, major weight loss, and stomach issues. I have had an increase of anxiety that started about a year ago and has worsened recently.
    I decreased my xyrem dose about 2 months ago after reading elsewhere that others had weight loss on xyrem. That seemed to help my appetite come back slightly, but it is deteriorating again with this gradual increased anxiety. After reading this blog by you, I have decided I am going to again decrease my xyrem dose and hope it helps. Xyrem had made my life so much more normal that I am afraid to stop it and be miserablely tired every day and be restless every night. However I’m getting to a point where I don’t know what would be worse- that or this ridiculous anxiety and stomach/ appetite issues.

    • admin says:

      Hi, Jenni:

      Sorry for the delay in getting back to you. Things are super crazy lately. I’m actually really glad you commented on that particular post. I’d forgotten all about it, and here I am, about 6 months into the second time I’ve been on Xyrem (I went off to have a baby) and I’m struggling with the same stuff! I cannot go above 3.0gr for each dose or all hell breaks loose. It’s so frustrating. The anxiety is manageable most of the time as long as I stay at that dose, but I am so flipping sleepy throughout the day again. That’s where diet and exercise come in for me….as long as I can eat enough calories to support exercise…ugh. I’ve noticed if I stick to the dose of Xyrem that helps me at least get better sleep at night, stops the hyponagogic/hypnopompic hallucinations, and cuts down on cataplexy, I can do other things to help manage the EDS. Yes, it means I have to nap at least once a day. It also means I have to watch how many carbs I’m eating during the day and stick to protein, fruits, veggies, and fats as much as I can to avoid food coma lol. And I have to exercise. I just have to. It helps my mood and the overall fatigue so much. AND…. SUNSHINE! Since I wrote this post, I’ve moved to Arizona where there is a LOT more sunshine during the winter months. I haven’t had the winter blues nearly as bad as when I lived in the Midwest. If you’re able to try some of these changes as well, it might help to reduce the sleepiness if you do decide to reduce your Xyrem dose again.

      Also, have you seen a GI doctor? What kind of stomach issues are you having? Does it sound similar to what I was going through when Xyrem caused/exacerbated gastroparesis?

      • Jenni says:

        I did go to a GI Dr but it was a very odd appointment. He sat at his desk and basically interviewed me on my symptoms and then said the next step is a colonoscopy and a (I forgot what it’s called off the top of my head) but a scope down my throat as well. This on top of lab work and a CT scan of my abdomen all needed to be done before he could begin to help me. I came home and talked with my husband and did some research finding your blog as well as some other sites that showed others having stomach issues with xyrem,so I decided not to go forward with all those tests.
        Thankfully lowering my xyrem dose helped the loss of appetite and weight loss. Also I was having a lot of gassy grumbling, which was worsened by my anxiety thinking there was something wrong with me.
        I still have some anxiety but I am able to deal with it now. Taking a lower xyrem dose I am still able to get a good nights sleep although it’s not quite as great as on a higher dose, but bring able to have a better mental state of mind and less physical symptoms during the day are so worth it.
        I take Adderall during the day to help combat the EDS and that mostly works. I agree the sunshine is very helpful!

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