It’s the ninja’s wife. Things have been so much better between us. The Vyvanse he is on is really helping him, he is like a new man in many ways. May 5 was our sixth wedding anniversary and we had a great time being together, we went out of town for the night and also went to a concert on another night. I got to see just how well his medication is helping him, he forgot to take it (for the first time too) on the morning of the day before our anniversary and he kept falling asleep the whole day and was zoning out more than he had in a long time. We didn’t realize until the next morning when we returned home from out of town that he had forgotten to take it. It makes me happy to share that our relationship is the strongest it has been in a long time.
The ninja is still struggling with the motivation to do things like write on this blog and his popular humor blog The Dingleberry. He used to blog on that blog several times a week and now it’s down to once a week if we’re lucky. This blog, he said he also wants to get into more. So I’m hoping that he soon finds the energy to carry that out. He has his next follow up appointment at the beginning of June, I will be curious to see if they up the dosage again or leave him where he is since he is doing much better.
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.
This is ninja’s wife, I guess it’s my turn. I haven’t written here in several months since I had weight loss surgery in January and have been preoccupied with the recovery and such. Things are about the same between us, some days are better than others. Communication is still a really big problem, we just started with a marriage counselor this week and we think we are going to like her, we tried marriage counseling last fall and it went pretty well, we stopped going because the counselor said we were doing better, this was right before the ninja’s diagnosis at the end of October. She started to see him on his own and this past February had me start coming back since things aren’t going well here. But the two times we went together she won’t work with us as a couple and then she said the comment that upset him so that made our minds up, neither of us were returning to her. The ninja will be starting with his own new counselor on Monday. So I am hoping a combination of a new marriage counselor and a new individual counselor for him will help us both. I don’t want a divorce, I’m not really into that, but at the same time I don’t like living in an environment where my spouse no longer speaks with me. He tells me he still loves me but hasn’t shown it in a long time, I’m lucky to get a conversation anymore. I hope counseling can help us fix and fill the big hole.
The Vyvanse medication seems to help a little, at least more than the Provigil did. I hope that they find a dosage that works the best for him. When he went to his appointment a few weeks ago he went with a list of concerns and for some odd reason he didn’t see his normal person and they didn’t even go over the concerns with him, so when he goes again in a few weeks the list will go with him.
2013 is the year of re-making me, I hope that ninja will be able to remake himself this year also. Each day that passes it seems like we grow apart a little more. We just don’t talk or do anything, he says he doesn’t know what to say to me, it hurts me because it hasn’t always been like this. We’ve been together over 9 years and only the past year after his bad car accident in January 2012 did we start to go apart. Like I’ve said before, I know he’s in there somewhere, I just hope he comes out soon.
I went to my Neurologist last Monday and got my Vyvanse increased to 30mg. I had noticed some improvement from the 20mg so I am going to keep getting it increased to I find the right dosage. I have been taking the 30 for a few days and am already noticing a difference. Sadly, I wasn’t able to see the doctor or the nurse practitioner I usually see but I was able to get the report from my neuropsych evaluation.
Most of the stuff in the report was stuff that I already knew, like that I had ADD with memory and attention problems. The one thing that bothered me about it was my IQ score, I got a score of 93 which is close to below average. I know that this can’t possibly be correct, I got a 4.0 in graduate school. Actually I got a 4.0 without studying or really trying very hard, and I passed the certification for my counseling license in the same fashion, I never even opened my textbooks, I returned all of them in mint condition because I never even touched them. I’m not bragging, I am just pointing out that there is no way that these IQ tests are accurate. I graduated less than 4 years ago, there is no way my IQ could have deteriorated that much since then. I don’t feel that these tests are accurate testers of intelligence for people with narcolepsy and attention problems. I took these tests at 8:00 in the morning without the aid of caffeine or medication so it really isn’t a shock that my score was so low.
I went to my counselor with these results, she looked them over and said to me: “It says you have lower than average intelligence, but we already knew that”. Needless to say I am not going back to her office and am currently looking for a new counselor. That was totally unprofessional and if she believes that I am lacking in intelligence she clearly hasn’t learned anything about me in the past several months I have been going to her. It aggravates me that people think you’re stupid because you have a neurological disorder. Even if it appears that way, that is not something you tell someone who is going to you for guidance and help with psychological issues.
Also, there was one weird result from the testing that I think is worth pointing out. During the test they measured my dexterity with both hands and I scored below average with both. I am right handed and somehow I scored slightly better with my left hand in dexterity. I have noticed that in the last several months I have had some trouble with opening jars and doing other things that require fine motor skills. My handwriting has never been good but appears to be getting sloppier, and sometimes I drop things. I don’t know if it has anything to do with cataplexy or not but I just thought it was kind of weird. Wonder if anyone else has similar problems.
I know I haven’t posted in awhile, mainly due to procrastination and lack of ideas. I had my neuropsych evaluation about 2 weeks ago and got my results back last week. My neurologist told me that I have ADD on top of narcolepsy, which I pretty much already knew, but had to go through with the evaluation to be able to be prescribed stronger medication. I have inattentive type ADHD, which used to be called ADD before doctors combined ADD and ADHD into one diagnosis.
Inattentive symptoms include:
- Fails to give close attention to details or makes careless mistakes
- Has difficulty keeping attention during tasks or play
- Does not seem to listen when spoken to directly
- Does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace
- Has difficulty organizing tasks and activities
- Avoids or dislikes tasks that require sustained mental effort (such as schoolwork)
- Often loses toys, assignments, pencils, books, or tools needed for tasks or activities
- Is easily distracted
- Is often forgetful in daily activities
My doctor prescribed Vyvanse, which is a stimulant medication, and took me off of Provigil because it wasn’t working. Vyvanse is a reformulation of Adderall which lasts longer and has fewer side effects. It appears to be working a little better than the Provigil, but I am starting out on the lowest dose at the moment. I have only been taking it for a few days but I don’t feel as foggy as usual so I am hopeful that it is going to work pretty well for me, especially when I get to start taking a higher dosage.
A little while ago I posted about a book on narcolepsy that was free for download on January 1st. It is called “Wide Awake And Dreaming” by Julie Flygare, I finally finished reading it the other day. It is about the author’s struggles with narcolepsy and is pretty informative on the subject, I would definitely recommend reading it.
I have been taking 200mg of Provigil for about 2 months now, my memory isn’t the greatest but that’s a pretty good estimate. Currently I don’t feel like it is working at all so I am anxiously waiting my next neurologist appointment in a few weeks. I have also decided to go off of Prozac completely, I feel like it is making me more tired and I was prescribed it before being diagnosed with narcolepsy and was prescribed it for something I was misdiagnosed with. I was taking 60mg and have slowly been weaning myself down for the passed week. Hopefully I will be put on something else that works better, right now I would prefer not to be on anything because I feel like the medication is just making me feel worse. I feel more “spacey” and zombie like than I did when I wasn’t on anything.
I am having my neuropsych evaluation on the 21st so hopefully I can take something that will help with my ADD as well because it is more frustrating to me than the narcolepsy itself. I am not sure if anyone else has had this problem but I feel like I am either overly hyper or a zombie, and more often I feel like the latter. It is like my brain either wants to function at full force or not at all, it is extremely irritating because some times I feel like I am in a total fog and can’t think, even the easiest of tasks seem difficult and I can’t form a complete thought or make a decision if my life depended on it, plus I constantly forget things. The most annoying part is that most people just plain don’t understand the condition and that there are very limited resources and information available.
We just wanted to share that the book “Wide Awake and Dreaming: A Memoir of Narcolepsy” by Julie Flygare for the Kindle, is available, TODAY January 1 only, for free on Amazon. You can read it for free on your computer, kindle, smartphone or tablet using a free kindle app. You can get it here: http://www.amazon.com/Wide-Awake-Dreaming-Narcolepsy-ebook/dp/B00AOBIPFC/ref=tmm_kin_title_0
I just downloading it for the ninja and I to read. There aren’t too make books out there about narcolepsy we are finding. Julie Flygare is a big advocate and we can’t wait to read her book.
Get it today and today only, it’s sure to be informative for those with narcolepsy and though living with a person with narcolepsy!
Cataplexy is a condition that often accompanies narcolepsy. It is characterized by a loss of voluntary muscle control in various parts of the body. It is often triggered by stress and other emotional responses like joy, sadness, or anger. Sometimes it can be so severe that the sufferer may fall down or be unable to move for several seconds or minutes.
I have never had a severe cataplexy attack where I have completely fallen down, or at least that I can remember. Normally I find myself slurring my words or having difficulty moving, my cataplexy isn’t as severe as some peoples’. Sometimes I will stare off into space and have a kind of scowl on my face, I usually don’t notice it unless someone brings it to my attention though. The milder forms of cataplexy may go unnoticed and many people with narcolepsy might not bring them to their doctor’s attention since they are less obvious. I have also noticed that if I am stressed I tend to be more clumsy and drop things, sometimes I will drop my keys and have trouble unlocking doors like I suddenly lost control of my fine motor skills. My handwriting is also different based on the mood I am in and how tired I am, it is pretty sloppy to begin with but some times it is far worse than usual and totally illegible. I have actually fallen asleep while taking notes in class before and wrote several lines of nonsense in my notebook while sitting in class.
I have also read that cataplexy often affects people with narcolepsy while exercising or playing sports. I have always had difficulty playing sports as far back as I could remember. The adrenaline and energy involved in playing sports can often trigger cataplexy attacks. It isn’t uncommon for someone with narcolepsy to have difficulty with hand eye coordination, this is a problem I have always had. I almost always have difficulty catching and hitting when playing any sport, for a long time I just thought that I was bad at them. I have read that you can even be almost paralyzed when partaking in sports, I remember when I was kid in gym class, I would always freeze up when playing, I would frequently barely be able to move even if a ball was flying directly at my head.
When I am anxious or in an uncomfortable situation I also notice that my cataplexy becomes more severe. I have always had pretty severe social anxiety, when I am in large groups of people, sometimes even people that I know and am comfortable with it feels like my brain completely shuts down, I get a foggy feeling in my head and can’t think coherently, I also have serious difficulty talking and thinking of things to say. I did some research and this apparently is a symptom of cataplexy as well. It is very irritating, I have gone to several counselors over the years about this, and nobody was ever able to give me any real answers or suggestions that worked which is frustrating. I have also noticed that if I am stressed out at work or if I am having an argument with my wife I also become almost paralyzed and unable to really move or speak, I may just stand around and stare with a blank look on my face for a few seconds to a several minutes. It is annoying because it gives the impression that I don’t care, but in reality it is like somebody pressed the “off switch” in my brain. I have heard of people with narcolepsy completely shutting off their emotions and avoiding all stressful and emotional situations out of fear of having a cataplexy attack. This is something that I have caught myself doing as well, but it definitely is not a healthy way to cope with it. I have heard that some medications such as Xyrem can decrease the amount and severity of cataplexy attacks, I am going to ask my neurologist about it when I see him next month.
It’s getting harder around here for both of us. He doesn’t seem to be getting any relief yet and the doctor doesn’t want to try another medication until he has had his neuro-psych evaluation which is still a month away. It’s hard for me because I feel like I have completely lost my husband, he rarely communicates with me anymore. He tells me he doesn’t know what to talk to me about. That upsets and angers me because I don’t understand how you can be with someone for 9 years and not have anything to talk about. Our arguments have increased ten fold since the diagnosis. We are both are under a lot of stress right now. He is suffering and I am get ready to undergo surgery in four weeks. I am trying to focus on myself and try to help him at the same time. But I get angry when I try to help him because it doesn’t seem like he is trying to help himself any. The arguments happen and then I just drop it. Why fight with him, the arguments is one sided, he just listens and says nothing back. I also drop it because it isn’t helping the matter I’m sure. I’m trying to understand what he’s going through but I can’t. You can never understand what another person is going through. Something I say on my personal blog is never judge the path of another especially if you haven’t walked it. I don’t want to be upset with him. It’s just becoming too much for me right now. I feel like I have a roommate, I’m afraid he doesn’t love me anymore. He says he does but never shows it. I just get upset and angry because I feel like I have lost my husband and that I may not ever get him back. I’m hoping that we can find him the right help and that maybe the person I feel in love with will come back, but for now I must try to love the person in front of me even if he appears to be different because deep down inside I know that my husband is still in there. ~The Ninja’s Wife
This is the first time that I have blogged in almost a month. I am not quite sure why since blogging is something that I enjoy and I haven’t even updated my humor blog: thedingleberry.net either. I have been wanting to blog lately but have been putting it off, I have read that procrastination is a major problem for people with narcolepsy. I have trouble starting projects and keeping up with them. Although I am normally a creative person I have been finding it hard to come up with things to write about lately, although I noticed that if I force my self to sit down and write something, the ideas usually start coming to me pretty effortlessly. For whatever reason it seems to be getting harder for me to blog lately. I updated my other blog almost daily for over a year now I barely update it more than once a month.
I also find that I have more trouble concentrating lately and am zoning out a lot more than I used to. I started taking 200mg of Provigil a little under a month ago and still find that I am having the same if not more symptoms of Attention Deficit Disorder. I am scheduled to have a Neuropsych Evaluation next month so hopefully after that I will be able to get medication that works better. Part of the evaluation is to determine if my ADD is caused by narcolepsy or if it is a coexisting disorder that also needs to be treated. I think that it is caused by the narcolepsy though because some days I have a better memory and am able to concentrate and pay attention than others. Lately I seem to be having severe ADD almost every day which is frustrating, however I started trying to cut down on my caffeine intake at the same time which might have something to do with it. I have heard that the symptoms of narcolepsy are almost identical to sleep deprivation. 8 hours of sleep for a narcoleptic is about the same as 3 hours of sleep for a normal person. It annoys me when people expect me to act “normal” but I wish that they could get 3 hours of sleep a night for a month and then try to function normally, it is not as easy as it sounds. It is hard to explain to people that don’t have narcolepsy, but you know when something wakes you up unexpectedly in the middle of the night and you feel disoriented and are still half asleep and everything feels like it is moving in slow motion and semi-unreal? I feel like that for the majority of the day, which makes it difficult to even focus on answering questions or holding an intelligent conversation. It is very frustrating and most people just don’t understand. I am not sure how much sense that made but some days it seems like even just going through normal everyday things is more difficult than it should ever have to be which is frustrating as hell.