My First Experience with Xyrem...

I wanted to take some time to think about what I was going to post about my experience with Xyrem so I could give an accurate report on it. So here it goes..

I received the package of Xyrem from Fex-Ed on Friday afternoon (they ship it directly to you and you have to sign for it) and boy was I excited. I couldn't wait to take the medicine and see if it would actually help. As excited as I was though, I had and still do have some concerns. The medication knocks you out so it worried me that if something happened that I couldn't respond to it because of the medication. But Sean reassured me time and time again that he will take care of anything that could possibly happen, even if he has to drag me out of the apartment during a fire. I am so lucky to have him in my life, so reassuring about the things that make me nervous. I think I was mostly nervous about trying something new and losing control of the situation. I think it's normal hesitations but scary none the less.

So the night progresses, Sean and I hang out and we ended up going to Walmart late at night and didn't get back until around midnight. FIRST MISTAKE. So we hung out a little and got ready for bed and I took the Xyrem. Now I was curious as to how it was going to make me feel, expecting a wave of exhaustion, followed by unconsciousness, so I kind of just hung out waiting for it to start working. SECOND MISTAKE. So about twenty minutes or so after I took the medication, I was starting to feel something. A warm fuzzy feeling and wasn't able to talk as well as I usually do, but it felt nice. I started talking to Sean some more and not really trying too hard to fall asleep. THIRD MISTAKE. So when I finally realize the point of taking the medication is too sleep (who would have guessed) I tried to relax and go to bed. Well to say that didn't work would be an understatement. Every time I relaxed and tried to sleep, my body would jerk. Sean said that it's what I usually do, but I must have been much more aware of it because of the medication. On top of all that, I started feeling very anxious and felt like I couldn't breath (which was really only me panicking). So Sean tried probably everything he could possibly thing about in the whole world. He told me a story, and we turned the t.v. on, we talked and nothing got me to calm down. After two hours of anxiety it was time to take my second dose, and I'm sure you can imagine how excited I was for that. So I took my second dose, hoping it would just knock me out, and to say the least, it made it worse. The anxiety got the worst of me and I really went insane. Sean had to open a window to the 20 degree weather because I was so warm, and I wouldn't sit still and was freaking out. We called the Xyrem hotline who said that this was all normal and it's possible that I was just started on too low of a dose. After trying to sleep some more I finally took a Lorazepam, which did nothing. So finally at about 5am, mid-twitch, Sean said I fell asleep. I slept until noon. 

What would I do without Sean. Thank God I have such an amazing and supportive person in my life. I really don't know how I would have gotten through the night without him. He helped me get to the bathroom and held be when I was freaking out. He turned the T.V. on when he thought it would help and he brought the dogs up so I could pet them and calm down. He told me stories to get my mind off the medicine and held my had when I was trying to go to bed. He stayed up the entire night with me even though I know he had to study the next day. I couldn't be luckier to have such an incredible, amazing and kind person at my side. 

When I got up in the morning, I was not in the best of moods to say the least. I was upset that the previous night didn't go as well as I was hoping (and actually went poorly instead), I felt bad that Sean was up all night with me, and just overall frustrated. I called the doctor's office to talk about what happened and their return service had a Nurse Practitioner call me who had no clue about the Xyrem. But after considering everything, looking at a few online blogs about other people's experiences, and thinking about my pros and cons, I decided I had to take the medicine again but with some changes:

1. TAKE LORAZEPAM BEFORE GOING TO BED

- I took the medicine about an hour before going to sleep to hope that it would relax me a bit. 

2. GET READY FOR BED EARLIER.

- I got into bed at about 10pm. Much earlier than the night before.

3. CALM DOWN BEFORE BED.

- I read my kindle and pet the doggies before bed so I was much more calm. 

4. GO TO BED RIGHT AFTER TAKING THE MEDICINE.

- Right when I was ready to turn the lights off and go to bed, I took the medicine.

5. REMAIN CALM.

- I went to bed like any usual night and fell right to sleep.

So last night actually went well. I woke up normally around 4am and took my second dose and went right back to bed. So it was actually a success. This morning I woke up and I was tired but thats normal and I probably just need to increase the dose. But I had none of the symptoms from the night before so I really made a huge leap. Now it's just a matter of keeping it going. 

A Roller-coaster of a Few Days (with some Narcoleptic naps in between)

So I know I have a long overdue post for everyone (being the five people that follow me). So Wednesday night the heavens opened up and the new sleep doctor that I made an appointment with in Knoxville called to say that they had an opening on Thursday. I was very excited to say the least. So Sean and I got up bright and early to head to Knoxville the next morning.

When we got to the doctors office, I filled out the paperwork and we were brought into a room with a bed that I guess they used for sleep studies as well. After the nurse took my vitals, the doctor came in. He was older, probably in his sixties, with gray hair and a beard and a short stature. Between Sean and I, we explained what has been going on lately (in terms of things becoming increasingly more difficult to manage  both during the day and at night).

He listened and his first suggestion was putting me on Xyrem. Sean has been doing research since I got the diagnosis and Xyrem was one of the medications that he came across. Basically Xyrem is a medication that you take twice at night. It comes in liquid form that you dilute with water. You put the Xyrem into two different containers and take one before bed and set an alarm for 2.5 to 4 hours later and take the second dose. Xyrem has proven to help Narcoleptics get the restful stage of sleep throughout the night and reduce cataplexy. The doctor said that he has seen a lot of success with the medication and highly recommends it. He also doubled my dose of Adderall which is a relief too.

So we left with good news I guess. We did some errands and then headed home. When we got back we went to fill the Adderall prescription, and everywhere within 45 minutes was out of it. So we went 45 minutes away to fill the prescription which is when everything kind of hit me.

I guess it was the combination of everything. I hadn't mentioned it before because it hadn't bothered me, but for the first time in my entire life I had to go to Student Services with a doctor's note to notify the school that I have Narcolepsy and if I fall asleep in class to make an exception. And I have to be on a medication that I have to take twice a night. And medications throughout the day to stay awake. My entire life really has changed since the diagnosis. I now have to stick to a sleep schedule and take scheduled naps. I have to plan my day around when I will feel most awake. I have to plan my rides according to how awake I will be and if I will be able to drive myself. And I guess the culmination of the entire day hit me. I just felt very frustrated and alone. I think that is the worst thing about the entire disease. It's not that I don't have plenty of support from friends, family and Sean (who has been the most amazing guy in the whole world) but I don't have anyone to talk to face to face about what having Narcolepsy is like, and that is the most difficult thing to deal with.

But Sean was, like he is every single day of my life, my rock. He let me cry and get it out and listened to what I said and was so supportive. He manages to show me some of the ways in which I can turn a crappy disease into a chance to educate others.

Friday was the start of a wonderful weekend. Sean and I headed to Galinburg for a weekend away in a cabin. The weekend was amazing. I was sleepy a few times but with Sean's help, I kept a good attitude the whole weekend and couldn't have asked for a better time. It was the perfect timing for a much needed getaway.

And I managed to get through the day today. The only thing that really got to me was that I fell asleep when I was cooking dinner because I sat down on the couch for like literally two minutes. That was rough but as soon as I get the Xyrem I'm hoping for things to turn around.

One step forward, three steps back...

So where have I been you might be asking yourself. I will tell you...I have been sitting on the couch trying to find the energy to get on my computer and type up a new entry. Things have gone from good, to manageable, to near awful in a matter of a couple weeks (strictly speaking in terms of the narcolepsy).

When I started on the Adderall, things were great. I was sleeping through the night and staying up during the day. I had the energy to do all the things I had only "dreamt" about doing for so long (haha pun intended).

And then lately I started lagging. I attributed it to a bad night's sleep here and there and then to the stress of moving and then I had a really bad nights sleep and thats when I knew something was up. I got up in the morning a few days ago and ended up going back on the couch and an hour later I was asleep for three hours. That's really when I knew that I was headed downhill again. I feel like I am on a constant roller coaster. I do really well for a few weeks and start heading downhill, then I go to the doctor and the medicine changes again and I am on the uphill slope again and back and forth and back and forth. So I am going to a new doctor in Tennessee tomorrow to get things adjusted, again.

What I think the most important thing people need to realize is not the physical or even biological aspects of Narcolepsy, but the emotional and social aspects of Narcolepsy. Imagine the most exhausting day of your life and how irritable and quiet and unmotivated you were. Now, imagine repeating that day over and over and over again, never knowing when you wake up in the morning if its going to be another day that it feels like the hardest thing to do to even get out of bed in the morning. That's what my days have been feeling like lately. I just started school down here in Tennessee and I love my classes. But without taking extra medicine, I can barely keep my eyes open to read. Today was the first day I really got to do some homework and that was only because I took an extra dose of medicine. Sometimes it just makes me down and angry and some days I feel like I can be an inspiration to others and teach people about the misunderstood disease. And some days I wish I could wake up and be "normal". I guess it's part of going through all the stages of grief.

I am just so frustrated with the ups and downs. Tomorrow is another day though. I hope that the new doctor figures some things. Wish me luck.

A small triumph in the world of Narcolepsy...

Yesterday was a tough day. I must have had a bad nights sleep and Sean tells me that I woke him once with an hallucination I was having. For people with Narcolepsy, the amount of restful sleep at night is limited because we spend much more time in REM sleep. When I have a bad night's sleep, I mean that I feel extra tired and this could be contributed to having less than the usual amount of restful sleep, which is so important, because Narcoleptics are sleep deprived.

 But regardless, I triumphed, made the most of my day and got through it. I chose to write about yesterday because it was the first time I had a hard day, and it was one of the first times that I didn't let it depress me. Now I know people reading this might not be familiar with what a hard day is like for me so I will explain. Usually I wake up at 8am and have the best part of my day because its when I feel most awake. But yesterday, Sean came in around 10am and had to wake me (because I can't get too far off a schedule because its vital to my sleep hygiene). And let me tell you all, I was exhausted and felt like I could sleep for three days. But I got up, took a shower, took my medicine and am SO lucky because I have an amazing fiance that made me coffee while I was in the shower. I went through my day not allowing the tiredness get me down.

Later in the day Sean and I went to Walmart and I had to stay in the car to take a nap. When Sean got back, he brought me flowers :)

The flowers gave me the little push I really needed to not let the rough day get me down. We came back to the apartment, had dinner together, I took some more medicine and I went upstairs to watch a movie with Katie (the landlord).

Yesterday was important to me because previously days like yesterday would put me in a bad mood because I was depressed that I was so tired and trying to make it through the day. I would usually be upset that I didn't feel "normal" and was weighed down by Narcolepsy. But yesterday, with the help of the most understanding and loving Fiance, I made it through the day with happiness.

It truly was a small triumph in the world of Narcolepsy.

I spoke too soon...

Just as I thought I was getting the hang of my medication I had a rough day. I was super excited this morning to share with everyone how well things have been going and then didn't do so well today. I got up this morning around 8 am (which is when I last posted), had my breakfast and took my Adderall. I was feeling pretty great all day. Sean and I went for a walk with the doggies around two and we got to explore the area.

When we got back I was feeling ok and didn't want to take the Adderall right away again. I try and hold off on taking the medications until I really need it because then I can have more of my day awake instead of feeling so exhausted so early in the night. So Sean and I sat down on the couch and next thing you know I've slept four hours and its 8 pm. Is it the end of the world.. no. Is it incredibly frustrating to lose four hours of your day to sleep when you'd rather be active and doing things...yes.

It just seems that I spend my days planning when to take my medication and when to take a nap and when to go to sleep and when to wake up, and how I am going to drive from point A to point B without becoming exhausted, that its become such a burden in my life. I feel like I'm restricted now and no longer get to hold on to the spontaneity of life that I used to enjoy. I'm trying not to get too down when dealing with the narcolepsy but today I felt that I had a step back in the wrong direction. I'm doing my best to forge ahead but days when I just don't feel "normal", its hard. I know tomorrow I will be more attentive to timing my medication so I don't fall asleep and I know that I'm not dying and this isn't the worst thing to be dealing with, but a good friend once told me, "Just because you don't have the worst, life threatening disease and just because you don't have the worst possible thing going on in your life, doesn't mean it isn't hard for YOU".  I really think that is an important concept to hold on to because we are all entitled to feel depressed or frustrated or angry or sad about things going on in our life, regardless of the severity in comparison to others. So for the rest of the night tonight I think I am going to let myself be upset that I have narcolepsy, and tomorrow I will pick up with a positive attitude once again.

And so it goes...

I haven't posted here in a few days and figured I'd give everyone an update. As the days go on living with Narcolepsy it seems that I've gotten better at timing my medication, which truly is a great triumph. I flew down to Tennessee  a couple days ago and then had to drive a couple hours to my Fiancé's (Sean) apartment which I just moved into. I managed to take my second dose of Adderall just as we were landing, which came it just enough time to start working so I was able to drive without a problem. Being able to drive two hours used to be something I was great at, but as the Narcolepsy progressed these past couple years it was becoming harder and harder. So to be able to drive two hours without feeling exhausted was truly a rewarding experience for me.

Even though I am getting the hang of the medication, its not to say that I don't have bad moments too. Just yesterday I was at the grocery store with Sean and I literally felt like I could barely stand. Thankfully I had an amazing guy with me who walked around and helped me get through the shopping. I had taken my medication fifteen minutes before and either a) had a sleep attack or b) it just hadn't kicked in yet. I think it was a sleep attack because I literally had a hard time standing up because I was so exhausted. But, it passed, and once again I did what I had to do which was very empowering.

I still have my moments of grief, because this is a life changing disease, where I am angry and frustrated and depressed but I try my best to keep my head up and remember that I now live with two very adorable dogs that I get to take a nap with every day :)

 

So yeah, life could be worse ;). Just yesterday I had the pleasure of taking my assigned twenty minute nap and I was so lucky to have the little guy on the right sleep with me. It makes all the difference.

It seems that things are still up and down for now but it's life and it's an adventure and I wouldn't have it any other way :)

Another day, another nap...

I have a feeling that pretty soon I am going to run out of clever titles for these blog posts. So what has my life been like lately living with narcolepsy? Well yesterday I went about my day doing errands and whatnot, feeling pretty good, especially after some caffeine. I went to visit my grandmother (Bubbe) after a busy day and of course forgot to bring my meds with me (I take Adderall twice a day and Ritilan as needed) so when I got there, I was about ready to pass out. Now my 86 year old grandmother doesn't completely understand Narcolepsy so she kept having my do things around the house and said "You can rest when you get home". I pushed through and made it but it wasn't fun to say the least. I just about got home and could barely move. Luckily my mom has really started to understand what it is like for me to be living with Narcolepsy, grabbed my meds for me when I asked, gave me some time for it to kick in, and I was good as new.

I think my day really showed me and hopefully others, more than I even realized during the day. The biggest difference that can be for someone who is living with narcolepsy is the difference between people in your life understanding your needs and what you go through, and having little understanding.

I am lucky my mom is starting to understand because after I took my medication I was a different person.  I was able to laugh and be apart of conversations, watch tv and make cookies because she took the time to help me out, give me my meds and the time I needed to get back to my normal self.

My grandmother however (and no I don't blame her - she's an 86 year old woman) didn't realize that if she had given me a 20 minute nap, it would have made all the difference. It's interesting to see how the reaction of others plays such a large role in the management and ease at which I handle this disease.

I really am lucky to have such a great mom.