Ups and Downs of Medications
I have been taking different medications for as long as I can remember, so I am used to taking medication daily. It was not until I was diagnosed with narcolepsy that I started to have a few challenges.
I take medication for health conditions other than narcolepsy, but none of my medications have ever been extremely strict on when I need to take them.
Adjusting to a new drug schedule
Starting last May, I started to take new medications for narcolepsy, as I was just diagnosed. At first, it was not too bad; I started on Ritalin and had to take it twice a day, once in the morning and once right before lunch. Since it was summer and I was not working full-time, it was pretty easy to squeeze that second dose in.
When I started my full-time job in September last year, it got a little difficult. I did not get my lunch until a specific time, and I could not do anything about it. The time I was given for lunch was later than I normally take my medication and eat, so that was a bit of an adjustment. After a while, I got used to it.
Adding Modafinil to help me stay awake
In June 2019, I started to notice that the Ritalin was not quite doing it to keep me awake all day. My doctor then prescribed me Modafinil, at first once a day, then it went up to twice a day. Adding this one was a little easier because I was already taking the second dose of Ritalin, so I just took them at the same time.
After a while, though, I was having a hard time waking up in the morning. My doctor decided to have me try taking both doses right away in the morning. That has been working well for me.
Switching to Concerta
Earlier this year, I started to get tired around 4 PM or 5 PM every day. I talked to my doctor, and she switched me to Concerta extended-release in the morning instead of the Ritalin. I still took the noon dose of Ritalin, along with Modafinil. This combination of medications worked for quite a while.
My experience with Xyrem
The medication to help me with sleeping is a little more complicated. I started Xyrem in June or July 2019. For those who do not know how Xyrem works, you have to take one dose at bedtime and another does 2 ½ to 4 hours later. That took some time to get used to.
I started using my phone alarm, and it was working for a couple of months. I then started to not wake up for my second dose, so I tried a plugin alarm clock. That did the same thing; it worked for a couple of months, then I started to not wake up for the second dose.
My Sonic Boom alarm clock
I had to do some research, and I found an alarm clock called Sonic Boom, which is a very loud alarm clock and has a device you put under your mattress, and it vibrates your mattress. That has been helpful, and there’s only a couple of times every so often that I do not wake up for the second dose.
It amazes me that I sometimes do not wake up for my second dose because my alarm could be going off for hours, and I would still be sleeping. That is how powerful Xyrem is.
Making lifestyle changes
Eating and drinking
Taking Xyrem has made me have to make a lot of lifestyle changes. I can’t eat at least 2 hours before bed, and I used to be a huge bedtime snacker. Another major thing I had to change was drinking alcohol. Alcohol and Xyrem do not mix well at all, and there are very specific guidelines we have to follow if we drink alcohol. I have found personally, for me, it is easier just not to drink than it is to follow all of these rules.
Sticking to bedtime
I also have had to make sure I go to bed at a certain time to make sure I can be up and able to drive after my second dose for work.
Scheduling around my medications
The biggest thing I have found helpful with taking medications, but that has been tough to get used to, is taking the medications around the same time every single day, whether it is a weekday or weekend. It can be a struggle to make sure to do so. I have to plan everything around it. I sometimes can’t do things with friends because of this, and not everyone completely understands. I have lost friends because of this, and while it has been tough, it has been necessary to cut them out because I did not need that stress in my life.
Coping with side effects
The side effects of the medications are another thing that has been a struggle. Sometimes it is hard to tell which medication is causing which side effects. Xyrem has caused me to sweat excessively, and that is the only one I know for sure is from Xyrem.
I have headaches, nausea, joint pain, etc., but these could be from any of the medications I am on. Sometimes it is hard to decide if the benefits of medications outweigh the side effects. Right now, I am dealing with the side effects, but my hope is to one day be able to figure out if any of my medications are causing some of the pains I am having.
Doing what's best for me
Personally, for me, it is a lot of work to keep a schedule and routine with medication and just everything in general. I can’t plan anything and lose friends all the time because of this.
I have learned that not everyone will understand or take the time to understand, and I do not need those people in my life. This can all be very overwhelming for me, and I have to limit stress the best I can.
Everyone is different with medications and routines. For me, this is what I have found helpful. If you have had similar or even different experiences, I would love to hear in the comments!
Do you feel that your doctor understands narcolepsy?