The last couple months have been pretty stressful. My wife was in the hospital most of January for an allergic reaction that caused her kidneys to not function properly as well as severe anemia, we still aren’t sure what is causing it, she has been recovering at home for the past 7 weeks. You can learn more on her blog: http://bariatricbeginnings.com/2014/02/28/waiting-on-why/. We also had to have our cat whom we’ve owned for 10 years put to sleep last Monday because he was very ill with cancer. I haven’t had the motivation to update my blog much, and am sorry for not posting more. I’m going to try to work on doing it more.
On the plus side, I had my monthly follow up with my neurologist today. I seem to be doing very well, narcolepsy wise, so I now don’t have to go back for 4 whole months. I have been doing monthly visits for almost 2 years now, it is awesome that I don’t have to be evaluated every month. About 2 weeks ago I stopped drinking caffeine completely. I found that it was counteracting with my Xyrem and made it harder for me to fall asleep, even if I didn’t drink any 3 or more hours before my first dose. Now my Xyrem usually knocks me out almost instantly, I was having several nights a week where I was having to take my second dose after 2 hours because I couldn’t fall asleep after the first, but it was all because I was drinking too much pop. It was difficult but I found that it greatly benefited me to stop drinking it.
I am now also taking the highest dosage of Xyrem, 4.5mg 2x a night. I have been on the max dose for about 2 months now, it seems to be helping but I have been so stressed out that it is hard to tell how well it is working. I’ve been having a lot of cataplexy due to stress and sadness (which are my triggers), hopefully once things go back to normal I will start noticing more benefits. I’m still taking 60mg of Vyvanse which seems to be working pretty well, although it starts wearing off by the evening most days. My narcolepsy seems to be pretty stable now, hopefully it gets a little better when I am not so stressed. I will keep you updated.
About a year ago, on October 25th, 2012, I was officially diagnosed with narcolepsy. If I could send a letter back in time to myself on that day, here is what it would say…
The next year is going to be difficult, but at least you finally have some answers to a lot of the symptoms and problems you have been experiencing for a very long time. Fortunately you are done with psychologists and psychiatrists misdiagnosing you and you don’t have to do any more sleep studies or uncomfortable neurological tests. It is going to take awhile before you start to get better, but you will, it will just take some time. You will try different medications that won’t help you but eventually you will find something that does. You will feel worse before you start to feel better and you will have several job changes as well.
It is hard to believe that you had such a serious condition for so long and it took so many years to get a correct diagnosis, which is very frustrating. Especially since you have been telling doctors about being extremely tired all the time and nobody ever bothering to check to see if you have a sleep disorder. There will be many challenges along the way and you will have troubles with your marriage, but in the end it will be stronger than ever. After working with your doctors and trying different medications your condition will begin to improve and you will feel better than you have felt in a very long time. However, you will still have some bad days where you can’t focus and feel like sleeping all day but those days will start getting fewer and farther in-between. Even a year later things aren’t perfect but they are slowly starting to get better and the future seems brighter than you ever imagined that it would. You may not notice that you are becoming a stronger person, other people may notice it before you do. The best thing to do is not to give up and try your hardest to improve your situation and you will get the results that you thought were impossible. In the last year you have also not had a single car accident or traffic violation and lately you haven’t been forgetting things quite as much as you used to, although it still will happen more often than you want it to and that will probably not change but it’s best not to let it bother you too much. Things may be overwhelming right now and the future may seem hopeless but I just want you to know that a lot has changed in a year and I believe that things will only get better for you in the years to come.
*This was written as part of Julie Flygare’s Dear Diagnosis Blogathon, learn more here: http://julieflygare.com/dear-diagnosis-blogathon/*
The ninja and I wanted to share about an awesome narcolepsy related cause called N[ART]. It “is a grassroots effort to create, share, + inspire continuous and evolving creative works + projects that express the realm between sleep and wakefulness as experienced by those with narcolepsy.” Laura is currently raising funds to for the planning and execution of a gallery-like ART EXHIBITION that will take place at the National Narcolepsy Conference in Atlanta this October. We think this is an amazing idea and cause to support and Laura is here in Ohio, even cooler!!
The deadline for donations is a week from today on September 10, 2013 (11:59pm PT). So head over now to support her!
Your donation gets you:
$5 An N[ART] postcard signed by the organization’s founder
$10 The Postcard PLUS an N[ART] sticker
$25 All of the above PLUS an N[ART] coffee mug
$50 All of the above PLUS an N[ART] t-shirt (sizes S-3X @ http://skreened.com/narcolepsyart)
$100+ All of the above PLUS a copy of the artist book, Narcolepsy: Through Image & Text
$500 At the amazing $500 level, you will receive all of the above PLUS a personal invitation to be our guest at the art show in Atlanta, Georgia this October 18-20
But mostly importantly you are support a great cause for a condition that isn’t well understood. N[ART] will shed light on a very misunderstood condition and it gives a creative outlet for those with narcolepsy.
More information about N[ART]: narcolepsy art is available at http://www.facebook.com/narcolepsyart and http://www.narcolepsyart.org.
Donate at: http://www.indiegogo.com/projects/n-art-art-exhibition
Even our cat Rowan wanted in on Julie Flygare’s Narcolepsy: Not Alone Campaign!
Narcolepsy is a neurological autoimmune sleep disorder in which the brain loses the ability to maintain normal sleep and wake states. It affects 1 in every 2,000 Americans (200,000-250,000 Americans).
It is an awareness campaign “to prove that narcolepsy is REAL and that we are NOT ALONE. People with narcolepsy AND supporters are invited to submit photos for the GALLERY & MAP.” You can learn more at http://julieflygare.com/narcolepsy-not-alone/
And get your submission in by September 1st! *IF* she can reach 500 photos by her deadline, she will giveaway FREE e-books for ALL of Wide Awake and Dreaming for an entire weekend. Submissions can be of people, pets, collages, cartoons, etc! She’s get close and needs your help! Even if you are not a narcoleptic but have a loved one who is get your picture in!
Since I started taking Xyrem about 2 and a half weeks ago I have already started to see some improvement. I’m still on a very low dosage and won’t be up to the full dose for another couple months but I feel like it is going to work pretty well for me. There have been a few instances where I have noticed that I remembered things that I normally wouldn’t have. A few nights ago my wife asked me to do something the following night and I remembered to do it the next day without being reminded, that is something that I normally don’t do.
When taking Xyrem I also noticed that if I try to get more than 8 hours of sleep I am more tired than if I set my alarm to get up exactly 4 hours after my last dose. That is what my neurologist recommended to do and it helps. Xyrem is normally out of your system 2-4 hours after you take it. I noticed that after it wears off I spend the rest of the time dreaming, there have been times when I woke up around 6:00 after taking a dose at 2 then trying to sleep for another hour. I noticed that the last hour I had been dreaming the entire time even if I only dozed off for a few minutes at a time. I also noticed that I have more energy and am less tired during the day, which is pretty awesome. I just wish I could start taking a higher dosage sooner, but I understand that it isn’t a good idea to do so, so I will wait patiently until my neurologist determines it is safe for me to be on the regular dosage. I will keep you posted on how well it is working.
On Monday I had my monthly follow up visit with my neurologist. I told them how I was still having problems with concentration and memory since I started taking Vyvanse. I also mentioned how I wake up in the morning feeling like I haven’t slept all night even after sleeping for 8 to 10 hours, and I told her about my cataplexy attacks. My neurologist suggested that I try Xyrem, I had been thinking of asking them about it before, so I was more than happy to try it.
For those of you who don’t know what Xyrem is, it is a liquid medication for narcolepsy that is to be taken at night. It is a legal form of GHB (more commonly known as roofies or the date rape drug). It is supposed to put you into a deep sleep, most people with narcolepsy don’t get a restful night’s sleep, Xyrem is supposed to help you get a more restful sleep. It also treats cataplexy and can help with memory and concentration problems related to narcolepsy. Xyrem comes in what looks like a cough medicine bottle, and it comes with 2 tall prescription bottles and a syringe. It is split up into 2 doses. You measure out your dosage with the syringe then put it into the bottles and mix them with 2 ounces of water. You take the first dose before you go to bed, you are supposed to take it immediately before lying down because it can knock you out almost instantly. You set an alarm for 4 hours after you take your first dose, then you wake up and take the second dose. Then you go back to sleep for another 4 hours. It is split up into 2 doses because it wears off after 2 to 4 hours, and you need to take 2 doses in able to get a full 8 hours of deep sleep.
First my neurologist gave me a packet that described what Xyrem is, how it works and she demonstrated how to take it. Xyrem is only available from one pharmacy in the United States, after the pharmacy receives your prescription they will give you a call within 48 hours. They will mail your Xyrem directly to your house. They called me within 24 hours of my last appointment. They asked me for my insurance details and mailing address as well as a few questions about my diagnosis and the medications I was taking. The pharmacist then called me the next day to ask me a few more questions such as when I would be available to sign for my medication when it comes. They told me that they would Fedex it overnight to me tomorrow and I will receive it on Friday. The whole process was a lot faster than I expected it to be. It will also only cost me $35 a month since my insurance covered most of the cost. I was afraid it was going to be extremely expensive. The pharmacy also has their own nurses who will call you every few weeks to see how your are doing on Xyrem which is pretty cool.
I am very excited to start taking it and will keep you informed on how it is working.
Patrick and Jessica
Here is my submission with my wife for Julie Flygare‘s Narcolepsy: Not Alone Campaign.
It is an awareness campaign “to prove that narcolepsy is REAL and that we are NOT ALONE. People with narcolepsy AND supporters are invited to submit photos for the GALLERY & MAP.”
Learn more at http://julieflygare.com/narcolepsy-not-alone/
One of the most frustrating parts of having narcolepsy is all of the memory problems that accompany it. My memory is terrible for the most part and it seems to keep getting worse the older that I get. The memory problems with narcolepsy are caused by not getting an adequate nights sleep. I have read studies that say that a person with narcolepsy has the same level of functioning and sleepiness as someone who has gone 48 to 72 hours without sleep, or someone who has only slept for 2 to 3 hours a night for a prolonged amount of time. Long term sleep deprivation can cause brain damage (most people with narcolepsy get a full night of sleep but have sleep deprivation due to poor quality of sleep).
I am constantly forgetting things which is extremely annoying. I can have a conversation with someone on the phone and forget the entire conversation after I hang up with them. There are many times when I forget where I put things, I try to always put things in the same place so that I will always know where I put them. If I don’t place something where I normally put it I won’t remember what I did with it, so I am constantly misplacing things. I also forget to do things that I need to do on an almost daily basis, I am constantly forgetting to take things with me that I need. I also have a very hard time with directions, I can’t remember how to get to places unless I have driven there several times, and if I haven’t driven somewhere in a long time I forget how to get there also. I have to use my GPS to get to a lot of places, and if someone gives me directions to a place I have to use my GPS anyway because I can’t remember what they told me. If I don’t use my GPS even when going places that I have only driven to a few times I often get lost and forget where to turn and end up having to rely on my GPS anyway. It is very frustrating not being able to trust your own memory.
I also have trouble remembering the past and there are many parts of my life that I just don’t remember. I also do things without any recollection of what I had done. I have gone to the grocery store before, driven home, then gone inside and left the groceries sitting in the trunk for several hours. I forgot I had even gone to the store until my wife came home and told me that all the groceries were still sitting in the trunk. I will also forget to put things away after dinner, today I cleaned up after we ate dinner and left the mayonnaise sitting on the counter for several hours because I forgot to put it away. Sometimes I even do weird things like throwing dirty dishes in the garbage then putting garbage in the sink without even realizing that I did it. People find me unreliable because I forget to things that I said I would do for them even though I fully intended on doing them I just didn’t have the ability to remember. I often have to set reminders on my phone to remind me to do things because I don’t remember to do things unless someone or something jogs my memory. These are all pretty common problems for people with narcolepsy and it doesn’t seem like there is much that can be done to help it. The only things that I have seen suggested are things like setting reminders, using post-it notes, and calendars. It gets frustrating because I am only 31 and I feel like I am going senile. At least I know that I am not alone and plenty other people with narcolepsy have the same issues.
Things seem to be getting better after having my medication increased. I don’t feel like I am zoning out as often. I still feel like I am having trouble paying attention, staying focused, and am having difficulty remembering things. However, even when taking stimulant medication I have heard that people with narcolepsy still have trouble with those sorts of things and have lower cognitive functioning than people without narcolepsy, which kind of sucks. I am happy to say that I am functioning a lot better than I was several months ago which is a very good thing. Hopefully after having my Vyvanse increased a few more times will have me functioning at an even better level. I often feel like I am a slower thinker than other people around me, and my brain seems like it is a lot slower than it was even a few years ago. Fortunately, I have been feeling a little more like myself lately. Things finally seem to be getting better since I was diagnosed with narcolepsy last year. For awhile it seemed like things kept getting more difficult, I still have some brain fog from time to time but it is less severe than it was a few months ago. Writing about my struggles also seems to have helped me substantially. My wife has also been a great supporter and has helped me get through some tough times, and I am eternally grateful for that.
On Monday I went to my neurologist to get my Vyvanse increased again. I am now taking 40mg a day. I asked her if I could be prescribed an extra dose because it seems to wear off after about 4-6 hours so I thought it would be helpful to take an extra dose in the afternoon. She told me that insurance won’t pay for amphetamine medications that are prescribed for more than once a day. She said that the higher the dosage I am on the longer it should stay in my system. Unfortunately I can only get it increased by 10mg at a time so it could be months before I am on the right dosage. My doctor also had me get some blood work done to check my levels, I am not 100% sure why I had to get it done but it has something to do with long term reactions to medications and because I have memory issues.
The worst part about taking amphetamine medications is all the hoops you have to jump through to be allowed to take them. First I had to have a neuropsych evaluation, then I have to go to the doctors every month to pick up a physical prescription because it can’t be faxed or called in because it is a controlled substance which is a little inconvenient. Plus I also heard that they have to make you take blood tests occasionally so that they can make sure it is in your system and you aren’t selling it. It is a possibility that it is part of the reason I had to get this passed blood test.
There is one symptom that I have that my doctor always asks me about, I’m not sure how common it is but she always seems to be concerned about it: zoning out. I rarely fall asleep during the day but I do have episodes of staring off into space for prolonged periods of time without realizing that I’m doing it. Sometimes I will even smile and appear to be having a conversation with someone during these episodes, I am never quite sure how long they last or when I am doing them, but it’s something my neurologist always asks me about. I’m not sure if I’m falling asleep with my eyes open or what’s going on but I am completely detached from what’s going on around me when that happens. I haven’t gotten any real answers on why that’s happening or how to make it stop.
I also feel like my ability to process thoughts and feelings has gotten much slower and more difficult. I used to be a quick thinker and very creative but have a harder time coming up with things. I used to be full of ideas and enjoyed writing but now it takes me forever to come up with ideas and I can’t think of things to write about half the time, which is the main reason I don’t update this blog nearly as often as I would like to although I have plenty of material to write about. I hope to get on the ball and start updating more often.