Guess it’s my time to write, the ninja seems to be doing better on his Provigil verses when he was not on anything. They increased it to 200 mg last week and he has been doing pretty well, at least in my eyes. I am noticing him being more alert and having less sleep attacks, he has probably only fallen asleep once on a car ride (while I am driving) in the past few weeks, usually that was an every time occurrence. He has also seems to be more attentive to me, that has been something he have been struggling with in our relationship. Sending time with each other was being nonexistent. By the time he gets home from work there isn’t much time to spend together, honestly that wasn’t the problem, it was on his days off. He seemed to be more alert after coming home from a 12 hour shift verses his days off. On his days off he would sleep while I was at work, which is understandable. Once I was home he would stay awake but would just seem to zone out and act like I wasn’t even home with him. He would go hours without talking to me. He would just play on his phone or his computer. Many times he wouldn’t even realize that I was talking to him. I felt like a fly on wall. Last weekend I sort of reached the end of my rope with it, he worked last weekend so we mainly had this huge fight over the phone or text message. We have been having marriage issues long before the issues, mainly with this sort of thing going on. We went to marriage counseling for a bit and it seemed to help. The counselor thought we could stop actually. The counselor continued on with him without me and he still goes twice a month. I see my own counselor who I have been seeing for a few years. But once we stopped going together it seemed that everything we worked on went back down the drain. We might have to go back and pay her a visit, anyway I digress, after the fight, I sadly (and regrettable) gave him an ultimatum, things need to change or I’m out of here. Aside from this we also don’t have much of a intimate relationship. The narcolepsy has caused issues with certain things and now it’s been so long that we both don’t really seemed to care anymore. I am sharing this personal note of information because I believe it’s important while living with a spouse with narcolepsy. But that’s not what makes a marriage, it’s just a small part in our opinion. Anyway, since this fight, he has been trying to talk to me and we try to do things together more. I hope it continues and that we can get this relationship back on the mend. ~The Ninja’s Wife
Saturday I really started to feel like the Provigil was working. I managed to stay awake and alert all day. I even went to some thrift stores with my in-laws and didn’t fall asleep in the car, which is something that I always did whenever we went out on long trips. That was pretty impressive. I also stayed awake all day Sunday which was pretty cool, I even had a little trouble falling asleep and stayed up later than the Mrs. I didn’t have as good a day on Monday though, I was pretty tired all day and took a 2 hour nap and didn’t really accomplish much. I worked all day yesterday and today, I work 3 12 hour shifts at a nursing home a week. This works pretty well with me that way I have 4 days a week off to relax. I noticed that I don’t feel as tired at work and don’t need to take caffeine pills and drink a bunch of pop and energy drinks to stay awake. I still get tired during work though, especially if there is any down time but I am able to stay active and walk around if I feel sleepy.
The Mrs. also got me an early birthday gift, a Phillips Wake Up Light. It is an alarm clock that is also a lamp, it gradually wakes you up by slowly getting brighter over a period of time. It turns on a half an hour before the alarm is set to go off, then slowly achieves maximum brightness over a 30 minute period. The alarm then goes off at the set time and gradually gets louder. The alarm can be set to the radio, sounds of birds chirping, or the sound of windchimes, they are a lot more soothing than the annoying buzzer noise most alarm clocks makes. It slowly wakes you up instead of having a loud annoying noise go off and jerk you out of sleep in the morning, it is also supposed to help people with narcolepsy wake up not feeling as groggy. I found that it has helped a lot. I have been using it a week now and have woken up from the light alone before the alarm has even gone off. Here is a link to it on Amazon if you would like to purchase one or get more information:
The ninja has been on his Provigil now for a week. As he stated in his last post he is not feeling any different. On the plus side he is not having any side effects. He had a headache the first two days but they never returned after that. We are hoping that on next Friday when we call his sleep doctor to check in that they might increase the dose for him. I can tell he is frustrated and I am too, I am truly sick of watching him suffer. But we talked last night and both agreed that better times would be ahead and that we just need to get through this. Our relationship is going about the same, we had a huge fight at the end of last week but this week has been good. The fight seemed to have gotten a lot out of both of us, because things have been fairly peaceful since.
I am afraid in my last post that maybe I came across as saying that I feel like I have to take care of him, it may have sounded that way, but that was not my intention. I only met to say that I feel like I have to handle more things that might normally be shared between two people in a marriage. I never want him or other people with narcolepsy to feel that I think the spouse has to take care of him. Sorry if that my thoughts came across that way and I offended anyone, that truly was not my intention.
The ninja’s 31st birthday is in a month, he got an early birthday gift yesterday, I learned from reading some posts in a narcolepsy support group about an alarm clock that incorporates a “wake up light.” I did some more research and decided to get him one as an early gift. It gradually increases the light in the room in the 45 minutes prior to the alarm sounding. He had to work today so he gave it a try. He set the sound on the alarm to go off at 6:15 and then at 5:45 the light gradually started to increase then at the alarm time the sound would go off. He actually woke up before the sound ever alarmed! He was quite surprised. He said he liked how it woke up him up slowly and not instantly with a blaring alarm. We’ll have to see how tomorrow morning goes for him. He works 12 hours shifts which makes for a long day, but then in turn only has to work 3 days a week. He has been work this schedule since June and actually seems to do better with this that 5 days of 8 hours shifts.
On the wife side of things, I really wish my sleep patterns where not one the completely opposite end of the spectrum, I actually have pretty severe insomnia. I have been managing it without prescription sleep aids the past several months, it is hard, but I spent so many years on sleeping pills that I don’t want to do that anymore. He went to bed over 45 minutes ago and I could not sleep at all so I had to get back up. He quickly feel asleep and I am not sure if he even knows that I am not in there, I am getting ready to head back in there soon. For once, I would like the ninja and I to be able to fall asleep at least somewhere close to each other, he is out in about minute and a half. I honestly can lay there for hours before falling asleep. ~The Ninja’s Wife
I have been on Provigil a week now, not sure how long it takes to reach an effective level, I think it takes at least 3 weeks because that is when my neurologist wanted me to call his office to let him know it was working. I have still been pretty tired throughout the day and still have a “foggy” feeling in my brain. Yesterday, I was driving and my wife noticed that I was starting to doze off a little so we had to switch, I fell asleep in the car on the ride home. Car rides have always made me sleepy. I still have to take naps during the day on my days off of work. My memory and concentration have not seemed to be improving either.
It is very frustrating when you are awake but not alert, I don’t even know how many times I zone out or stare blankly at nothing during the day and I can’t even recall what I am thinking about. I have trouble keeping a consistent thought process most of the time and it seems like my brain just skips around to random thoughts all the time. I know that this is a side effect from not getting sufficient sleep for several years. I feel like I have gotten more and less able to think during the last 9 months. I am not sure if it is related to my car accident or because I work day shift instead of night shift now and don’t sleep during the day anymore, except for naps. Both things started around the same time. The “foggy” feeling is worse than the tiredness because I often have trouble answering simple questions, I also have difficulty following conversations and many times when I talk I don’t make a lot sense and it is hard for to me explain myself and get my point across even when I can think of the words in my head they sometimes come out in a jumbled mess, other times I feel like I can barely think at all. The worst part is that I feel like if I could just get a little sleep I would feel better, but I can sleep for 8 hours or more and still feel just as tired as I did when I laid down. From what I have learned these are all pretty normal complaints from other people with narcolepsy.
The ninja finally was able to get his prescription filled Thursday morning and started on it. He said he got a headache this afternoon and had to lay down for a bit but other than that he said he wasn’t having any other side effects at the moment. He is to call the doctor in three weeks to check in. He doesn’t have an actual appointment until the end of January and is waiting a call to schedule a neuro-psych evaluation to see if his attention deficit disorder is a result of the narcolepsy or is a separate issue. The ninja and I got in a bit of a fight this afternoon. I think these past two weeks since the official diagnosis have just been too much for me. I feel this heavy guilt for getting angry at him in the past for “behaviors” that were just a result of his condition. The memory issues, the inability to properly say what he needs to when he needs to…I kept tell him it was because he wasn’t trying hard enough (at what? I never said and I don’t know actually.) The more I am slowly learning about narcolepsy the more I try to understand and be more compassionate. But today I just lost all compassion and got angry again. I got angry because our marriage feels like it’s just a roommate situation many times. A lot times there is no affection between us, he’s too tired or says he doesn’t know how. Though he did long ago. He says he loves me, I try to believe it, and we made up. But I can’t help but feel that I will get angry again even though I know need to be more compassionate, it’s hard feeling like you are the only one who cares. ~The Ninja’s Wife
After persistently nagging my neurologist’s office this week (5 phone calls, 3 faxes) I finally got them to send the prior authorization forms back to my insurance company. It only took 8 days so it really wasn’t that bad, took several weeks for my psychiatrist’s office to prior authorize a medication once. Luckily Provigil has a generic form, so with my insurance I only ended up paying $15 for a month’s worth. Thought it would be more expensive. Since I just started taking it today it is hard to know if it is going to work or not. I have been feeling kind of hyper today, but I also drank a 2 liter of Pepsi Max which is full of caffeine which may have something to do with it. I’ve been up since 7am and didn’t take a nap, and I am not tired as of 5:30pm so that is pretty good I guess.
One of the most frustrating things related to narcolepsy is problems relating to memory. My short term memory is terrible, it seems to be getting worse the older I get. I just recently learned that it is a common symptom of narcolepsy. Some days I feel like I have Alzheimer’s disease because I can’t remember things. I have gone to the grocery store, driven home, and left the groceries in the car all day without taking them in the house and putting them away before. Within the 5 minutes it took to drive home I had completely forgotten that I had even gone to the store, and didn’t even think about it until my wife came home from work several hours later and asked why I left the groceries in the car. This is just one example, I have done similar things hundreds of times. It also takes me several times to figure out how to get to a new location without using a GPS, I used to work 45 minutes away and had to use the GPS to get to work for several weeks. I also tend to forget where stores and places are located if they are more than a 20 minute drive away. My neurologist told me that if you’re tired you have trouble staying focused and concentrating and if you have problems with those 2 things you are going to have trouble remembering things, which makes perfect sense.
I often dread calling people on the phone, especially doctors and insurance companies because I forget the reason why I was calling as soon as they answer the phone, even if I do remember I have trouble wording things correctly. Sometimes it takes me several tries to accurate explain to the person on the other line what I am trying to say, and I absolutely dread leaving voicemails, mainly because I usually forget to include crucial details, sometimes I even forget to leave my name or phone number. This happens a lot when I try to talk to people in person too, many times I can’t think of something to say until several minutes later after standing around in silence and feeling like an idiot. It happens all the time and is very frustrating.
On a positive note, here is an animated gif of a narcoleptic cat: