Narcolepsy/cat W/ Bipolar Wife Or Maybe Not?
Posted 15 February 2009 - 01:17 PM
Our life now is weird b/c we are both very tired. She is always trying to push through and get things done. I am unable to help as I am very severe. When I am not having an attack I do very well, but I am unable to push through as much. My wife gets very angry when she pushes through and then we both completly shut down. We purposefully don't drive to alot of places to visit people b/c we know one of us will have to stay awake and neither one of us will be able to do so. We have two small children and do not want to put them in danger. OMG! What will we do if she is? I'm not sure anything would change really except that my wife wouldn't be misproperly diagnosed and maybe she would get some different meds. I am currently on Xyrem and it is helping me out. I would love to see her find something that works for her and we could both be happier and enjoy our kids. What a team we make!
Posted 15 February 2009 - 05:38 PM
Your wife very clearly needs a sleep study. If the study comes up that she does have some sort of sleep disorder, then as you know they can start to address it and as she gets more rest the particulars as to whether or not she's bipolar will then be more apparent or non-apparent.
As a bipolar w/ N I can tell you that I have, and have always had flares of rage and anger so intense that I can hardly even describe them, except to say that they are extraordinarily uncomfortable and very, very volatile, however I can also say that these rages get worse and more frequent with excessive sleep deprivation, so it's best that I keep my N in check as best I can in order to avoid bipolar episodes. My bipolar dx is far more clear in that I've had both manic and depressive episodes, while it's highly genetic in my family, as my mother, father and grandfather all suffer/ed with it, so I'm not worried that I've been misdiagnosed.
So, aside from the wonder regarding the bipolar disorder, I would say she very desperately needs a sleep study if she's having that much trouble staying awake. If she's not having any cataplexy attacks it doesn't mean that it's not N, but the symptoms that you describe do not necessarily mean that it is N. I mean, it could be sleep apnea or REM disorder et al. which could be causing such excessive daytime sleepiness and irritability. There are also a myriad of psychiatric drugs that are used for bipolar that can cause sleepiness etc., but certainly not to the degree that she is experiencing.
Once you have a sleep study, I'm sure you'll start to find some definitive answers and then you can move onto other things.
Posted 15 February 2009 - 06:32 PM
I think half of the people dx'd with bipolar are not bipolar at all...if not more than half. A short while ago, Bi-polar was the new black. It was the default diagnosis. It was how doctors technically explained,"uh...I dunno what's wrong with you". Having years of my life removed because of a misdiagnosis and Zyprexa has convinced me of this.
I'm not saying manic/depession 2.0 isn't real. I am saying the pharmacuedical companies made a pretty penny off of the many people that were told quiting their medications cold turkey would result in something really, really bad.
Before anyone started asking about my relationship with my mother or if the TV talks to me, I wish I would have had a sleep study done. The symptoms of narcolepsy reach farther than what we know on the surface. Yeah, you have your EDS, and Cataplexy and sleep paral...but we often have sysmptoms of just being tired! What happens when we are tired? Ask anyone...
We are cranky...
We are not pleasant to be around...
We make questionable decisions...
Oh, and we may tend to be a little depressed about the situation.
Dr. Shrink would easily call this Bi-polar, right?
I would HIGHLY recomend a sleep study for her...ASAP!
There is debate right now to the topic of cataplexy MUST be present to be true Narcolepsy. While this debate is interesting to me, I stay out of it unless asked my opinion...BUT text book case of Narcolepsy or not, we should still never let that discourage us from taking control of our health issues.
If her doctor needs to call it Narcolepsy in order to get meds that would help (like Xyrem or Provigil), so be it.
Lastly...YOU are a wonderful man! Maybe because you know what it is like, but I hope you give yourself credit for trying to help her!
Posted 15 February 2009 - 11:16 PM
Posted 15 February 2009 - 11:19 PM
Thanks for the info and I do think she needs to have a sleep study. I've had close and very dear friends that were bi-polar, but more so to the same degree that you describe. My wife, on the other hand, says she doesn't have the manic attacks and she gets the feeling that her blood is boiling or she sometimes says" it feels like my nerves on the outside of my body" and she hurts to the touch. I'm a man of prayer and believe that if I seek out Wisdom, she will bring to me a better understanding. So I try to surround myself with people whose life experiences have taught them to be wiser in the decisions they make and give to a generation, like myself, a clearer understanding of reality with purpose. I'm truly grateful to have her as my life partner and it is our goal to help better one another any way we can. All I can do right now is be the husband and father God wants me to be for her. Thank you again for your response...... it helps.
Posted 15 February 2009 - 11:34 PM
I know this.. My hubs calls it "hitting the wall," and I can do nothing. Seriously, absolutely nothing. This happens every day.
We purposefully don't drive to alot of places to visit people b/c we know one of us will have to stay awake and neither one of us will be able to do so.
Although I truly miss friends, going places, having people over, I am too tired to care about it anymore. Do you feel like you have to put every ounce of any available energy into what goes on at home? The very few times that I feel like I can get out of the house I end up not doing so because I know that within ten to twenty minutes I will be so tired that I'll return home only to pass out on the couch, floor, bed, porch, front yard, car. It'll use up so much energy - I think that it may have to do with overstimulation of my brain - (it's pathetic), that I know that I will be worse off than if I had just stayed at home. That's when cataplexy gets the worst.
We have two small children and do not want to put them in danger.
I'm so sorry that you have this fear because I know it well. Both of you sound like amazing parents. The only thing that helps me not worry so much is that I know that I am doing the best that I can at every moment, even if I now that it's only half-assed. If it is half-assed, then I know that that is the best I can do at that time. That may not sound right, but I hope that it makes sense and that it helps.
OMG! What will we do if she is?
You will cope. There is nothing else that you can do. Try to stay the course together. How did two N get together in the first place? I've never even met another person with it face to face. You MUST answer this! Please?
I'm not sure anything would change really except that my wife wouldn't be misproperly diagnosed and maybe she would get some different meds. I am currently on Xyrem and it is helping me out. I would love to see her find something that works for her and we could both be happier and enjoy our kids.
I can't take Xyrem, but my doctor seems to think that if I could stomach it then it would be the answer to all my problems. Every last one of 'em. If your wife can get the dx, then hopefully she can try it out.
You have beautiful children.
Posted 15 February 2009 - 11:58 PM
Well, I'm not sure that we know that either! We used to love to work out together and we were friends first. At the time, I was having a pretty good year and suffering from a great deal of back pain. My Narc symptoms were probably the least of her worries. We talked about the falling asleep stuff and all the funny things we did but it never really hit home. We just assumed she was bi-polar like she was told. So then as my symptoms became worse again and my other meds stopped working things got hard, not to mention she was no longer on meds b/c she was pregnant. Oh, how God was ever present in our lives! We drove to work together and sometimes both of us were so miserable we couldn't see straight. Anyway after a while, I had to take my wife with me to my neuro, so he could explain what was going on with me and my feelings. While she was sitting there it was like a big Ahha for her. She was saying yes, I do know how it feels to always be tired, I do know how it feels to constantly try to stay awake. She then started thinking great, if both of us really have this disease our kids are screwed! Then as time has gone on, we both look at each other and go great your tired, well me too! What the hell do we do now! Push through and make it happen. While we are at work we text each other and say I am so tired all I want to do is sleep. It is like who can top the other at this point, the only sad thing is that we both mean it. I have had several nights or conversations with her where she is completly cohearent and making a great deal of sense, and then all of a sudden it is over or she wakes up and wonders what in the hell we were talking about. When I tell her she says no we didn't and stop messing with me like that. We are quite a pair!
As for the stomaching Xyrem, I doubt that will be a possibility for her. She cannot take liquid medications. She is unable to keep them down at all. I was also talking to her tonight about how foods have always been an issue for her. Her stomach hurts alot or she gets even more tired if she eats a big meal or a heavy meal. Fried foods kill her. Like your family she was brought up on deer meat and all wild game. She didn't really have any other meat unless her family went out to eat for a steak. I really wonder what they will say to her and how they will treat her as she is severly allergic to many antibiotics as well. This is going to be interesting.
Posted 16 February 2009 - 12:38 AM
I agree with the others...your wife needs a sleep study ASAP. BP meds are going to be bad if she has N because they'll try to stabilize her mood by giving her sedative meds. No good if you're sleepy all the time.
Posted 16 February 2009 - 08:13 PM
anyway.. I've heard from several people that are misdiagnosed with BiPolar that end up having a sleep disorder... you also mentioned she gets this feeling that her nerves are on the outside of her body... does that happen a lot? I have a friend with Fibro Mialgia (spelling?) that has the same constant fatigue that you get with N and IH, but that is exactly how she describes her pain... so that may be something to look into as well...
..either way.. yes, the pp's hit the nail on the head, that bipolar disorder is one of those blanket diagnoses....and isn't always the right one...
as for how you'll get by? I think you two have a lot of challenges, but also something many of us don't.. and that is a spouse that understands what you're going though....
Posted 17 February 2009 - 03:39 PM
In the meantime an overnight sleep study would probably be a good idea to check for sleep apnea. I think that is far more common than people realize and can cause EDS and other sleep disorder symptoms. Being on psych drugs can alter sleep architecture, though, so whether anything else would be found while she is on drugs is questionable.
Finally, yes I truly believe that most of the people being diagnosed with bipolar and other mental disorders really have something else going on, be it sleep disorder or other physical disorder that psychiatrists generally don't bother checking for. It's easier to say someone has some mental disease and give them a pile of drugs to "treat" it.
Posted 17 February 2009 - 04:52 PM
More to the point, do you know how many Neurologists are diagnosing neurological disorders as psychiatric simply because they don't want to say they don't know what's wrong with people? It is extremely disturbing to me that they are allowed to do this. What makes them qualified? A checklist on a computer?
I mean, think about it. How many of us here have been misdiagnosed with a psychiatric condition and, of those people, how many of us were diagnosed with said "psychoses" by actual clinical psychologists or psychiatrists with actual PhD's from actual accredited institutions? I for one was not. It was always a neurologist time and time again. And they were wrong! The whole lot of them. And they don't even usually refer people to shrinks afterwards. They just give them a bogus dx, some awful rx, and shoo them out the door. "Don't let the door hit you on your way out..."
And, on those rare occasions when the neuros did send me to shrinks to deal with my "psychoses", the shrinks said "you're perfectly normal. you just have PTSD from seeing doctors." It's criminal.
(and no, that thing about the checklist on the computer was not a random thought, the last sleep doc I saw did just that. "It's not C, it's anxiety!" Oooh I could write a musical about N...wouldn't that be fun? hehe)
Posted 17 February 2009 - 07:32 PM
I went to a neurologist twice. Both of them were extremely rude. I mean, beyond even common decency, so I'm done with neurologists. Both of them told me I was crazy and referred me to psychiatry.
I've seen many many psychiatrists over the years. Every single one of them diagnosed me with psychosis along with some supposed mental disorder like bipolar, schizoaffective, depression, etc. They were every one of them quacks. They didn't even bother to ask if the hallucinations I experience were in any way related to sleep. If they had just asked that simple question, it would have saved me a lot of time, money and drugging that harmed me. I'm very very anti-psychiatry at this point.
You're not missing anything, that is what psychiatrists do as well.
I feel fortunate to have the sleep doctor I do. He's very smart said I'm not crazy at all I have this narcolepsy thing!
Posted 17 February 2009 - 07:46 PM
The thought of going to a new doctor gives me such pause b/c I too was/am traumatized by my past 15 years experience with incompetent, malicious, flippant physicians. But, I finally took her advice once I had a bit more time and energy to concentrate on seeing a new physician and here I am.
So, I have to hand it to her: the shrink showed me the way and I finally stumbled upon the majority of my problem: N.
I wish you all had such a wonderful doctor. I would share, really I would.
Posted 17 February 2009 - 10:22 PM
Interesting - the people closest to me have said that it was my last pregnancy that seems to have done something, like I've never stopped being pregnant. I've always been a champion sleeper, but I've also always had an extremely long fuse (sometimes too long), and I started asking for more help and for answers when I was getting ticked off at everything people did and having a hard time keeping myself in check. In one of my med changes a year or so ago, they doubled by Wellbutrin dose, and I, too, got pretty darn manic. It was pretty cool for about a day or two, because all that energy allowed me to get some stuff done! After that, not so much. My best friend had seen that happen before and said, "Yes, you are getting manic, and you're about half a day away from a real problem." So I went back to my original dose and called the doctor. Other than that, though, there's never been any question of anything but plain old depression.
Posted 17 February 2009 - 11:41 PM
I am impressed. You did go back and read a few of my posts. Actually, I never ate game meat until I married my husband. I don't like most of it. We had pheasant last night and tonight, and I only ate the veggies. It bums him out big time. I thought it was sooo sexy that he butchered his own meat. There was something about him hunting with a bow and arrow that did it for me, also. I don't think I would have tried it otherwise. I'm not a big deer meat fan - mostly just elk, and moose will be tried next season hopefully.
I really wonder what they will say to her and how they will treat her as she is severly allergic to many antibiotics as well. This is going to be interesting.
You guys are going to make it. God is your rock. Don't lose so much strength that it is an effort to have faith. Now that I've read your second post, I admire both of you even more. Most people - fortunately - have no idea what it's like to live this way. N is such a bizarre disease as it has no outwardly visible characteristics. It seems that most of us spend years with misdiagnoses'es (I have no idea how to speel that word at this moment) that place the majority of us in a psychologist's office, which I deeply resent. I have a copy of a research paper that states that N caused by orexin deficencies is a neurodegenerative disease. I keep a copy of it because I need to have tangible "proof" because it helps assuage the bitterness of years lost to incorrect mental health problem dx's. There are too many resemblances to other neurodeg. diseases, and I just don't understand why doctors continue to do what DD stated and use a nonthinking computer to sort through a list of symptoms - why they continue to misdiagnose with the all too easy mental illness answer. How many people could have been spared a few years of irrecoverable brain tissue degeneration? Am I making sense? I am so sleepy but can't sleep. My husband wants me to go to bed. He won't stop yawning. "Are you almost finished?" The foundation of marriage (for me) is faith. My guy is awesome, but I don't like being told to go to bed. I can never give him a hard time about it, though. He is constantly, patiently, lovingly devoted to me taking care of all the things that I don't, which are many. Awww, now I feel all warm and fuzzy inside. Going to bed on time is actually in my job requirements, so off I go.
BT2U - Your wife and you have a long, slow road. Faith and prayer. Don't give up hope. You're loved here.
Posted 17 February 2009 - 11:47 PM
First pregnancy = BAD N.
Second pregnancy = god help us all.
N is an autoimmune disease, and the way I understand it, stress can make any disease worse. Okay, I know I have to go to bed now because I don't think I'm making logical statements. My 3rd post since I said I had to go to bed and husband is so damn impatient.
Posted 18 February 2009 - 12:31 AM
My Senior year, I decided to ask my friends, who I'd known since grade school,to email me short stories they remembered related to my many attacks. I kept all the emails. I even asked people to describe things they noticed diff about me before these episodes occurred ie. behavior,speech etc. I felt like I had to figure this thing out. I was the best of the best at everything I did, especially Music and Sports.It was, this "curse", I called at the time, that was keeping me from going above and beyond. It was my dream to play for the Elite Marine Corps Band, since I first saw them when I was in 4th grade. I had to be off the depakote for a year and so called "seizure free". Well, as I know now, what I didn't know then, some seasons are better to you than others. So was Cleared and I auditioned for the Marine Band passed, enlisted, went to boot camp, graduated with honors, excelled in combat training as a squad leader,graduated with honors, went to the armed forces school of Music, graduated with honors, went to my first duty station and was promoted again and again. Then after 9/11 is when the HH and automatic behavior began. I was now dancing again , this time with the military docs(Tools).
Million Dollar work ups,write ups of me being crazy and looking for a way out of the Corps. I wanted to retire, they didn't believe me, I faced discrimnation, false charges, they thought I was a big faker because I was a declarative Marine suddenly gone bad.
It was a sleep doc about to retire from the Navy that finally did my sleep study. I made some history that day. There was no mistake that every symptom of N was present. It was like seeing a report of someone with full blown cancer. I had no idea how severe it was until it got to the point where I would fall down at any given moment. Now with this dx my career was over, but not before suffering a spinal injury during OIF. I ended up getting discharged(honorably) w/ service connected disability.
My doc now is also pretty sharp. I didn't know about this network until he told my wife and I about it.
Posted 18 February 2009 - 12:48 AM
Posted 18 February 2009 - 08:45 AM
I was dx'd as a teen with "situational anxiety". i thought maybe i was bipolar. i woudl sleep for weeks, sometimes months. then i'd be ok. some days i'd be "high as a kite" so awake and happy. now i realize well yeah after feeling like poop for months of COURSE im happy on the days i feel even just normal, let alone great. now that i've been diagnosed with N (at 24) i can see that my mood had more to do with always sleeping and depressed about never being able to accomplish what i wanted, and my body feeling "not right', and good days (which really were few and far between) really just felt good because i was actually awake. or, i'd have a week or even month where i wouldn't be so tired, so i'd spend more time with friends, get more school work done, etc = happy lindsay.
let us know how it goes with your wife, and you are both in my thoughts. i know how hard it was for me and my fiance with ONE narcoleptic in the house. mind you, he doesn't nap much and i love a nap buddy (am short one now that my doberman is passed away... he was the best nap buddy ever). so you can plan nap dates and movies in bed HAHA oh how gloriious that would be!!!!
An honest thought from the relationship aspect. don't expect anything from eachother, just trust that you will get from eachother all that yhou have that hour or day to give. have each other's back. my fiance is healthy but owrks lots of over time. there are days where ALL the dishes are dirty, most of the clothes need to be washed. neither of us nags the other (usually unless we see the other is pefectly able to do it *ahem dishes* but is spending days of spare time on other stuf *ahem PS3* LOL). we don't fight, and im getting better about not being defensive when he DOES say it'd be nice if i did... or such, cuz i know an attack isn't coming (im naturally very defensive). we try and have each other's back, on my good days i get what i can caught up, and on his days off he does the same. when we both feel like crap (him from work me from N) we lay on the couch watching a movie and say well the other stuff will keep. when im grumpy he doesn't take offense, and when he is i don't take offense. it's nice cuz when i try and keep my gumpy in it multiplies and well... not good. so now we are just openly grumpy in general but not "towards" the other. sometimes getting your *BEEP*ing out while feeling comfortable to do so without threat of retaliation is very theraputic.
just a thought
Posted 18 February 2009 - 12:10 PM
*I need to get off topic for one moment: It's morning now, and I've slept. I went to bed knowing that I had typed that my husband is too impatient. That's the sleep drunk talking. I usually don't discuss him on this forum because NN is MY space, my personal place. But I want everyone to know that I kiss the ground that my hubby walks on. I adore everything (most) about him and appreciate every waking moment that I have with him. I cannot imagine that God could have found a better partner for me or a better "daddy" for our children. On this site I express what immediately comes to mind because it is nice to do so. These are not things that I would verbalize, or at least not the way that I do on here. When I speak I don't use the choice words that I type in my NN posts. LIke I said, NN is mine, for me, for me to cope with having N. But please know that I don't disrespect my guy.*
BT2U - I am so very sorry about your career. I've had dreams smashed - life plans that I began when I was a child. Goals that I exceled at. How can we be so good at something and have it ripped from our souls like this? Your comparison to full blown cancer is a good one. My mother expressed physical feelings that sounded similar to what I've felt most of my life. She said that she could never have lived a full life with those physical limitations. It is a terrible thing to be dx'd w/ such an illness, but sometimes I think that it would be nice if N could provide some "evidence" of physical illness such as cancer and other diseases. N is dibilitating if it cannot be treated w/ meds. To me, stress is a major factor in making this disease worse. The body's immune system, I think, becomes "striped" of the ability to heal itself. There's a certain point that is reached, and it seems that there is no going back. It would be devastating for our children to lose us, but sometimes the thought of having a life that is going to last another couple of decades like this is demoralizing. I see the affects on my children and my husband and it crushes the joy out of me. There is so much to live for and to see and do. To experience and share. There is nothing in this life that I don't want to participate in, and I physically cannot do it. I want to take a walk with my family, but it wears me out so badly that I come home and become a vegetable. BT2U, try not to think about what "was," because unless you or your wife end up with a miracle drug, it's not going to happen again. The tough part is accepting that fact, and embracing what is yet to come. To strive to be the best you can be, for personal excellence, even when personal excellence is forcing yourself to get out of bed to go pee. This life is a beautiful world that I want to share with others. The things in this life that are ugly, bad, harmful, etc., hurt other people, and in turn those people hurt others, etc. Even with people that have suffered and seen the dark side that this life has to offer, I want to share a part of me that could maybe somehow help them in any way. Sometimes a simple hello works, sometimes helping someone clean up, helping clothe someone, sitting and listening, - simple gestures - is all it takes. I've gotten to where it takes so much energy to even sit and listen to another person. It's energy that I can't take outside of my house because it needs to be reserved for my family. What I've lost from my past is in the past, but it is soul sickening to know that I am limited in expressing humane compassion.
I would love to hear you play. What instrument (s) do you play? Can you upload for us? Both my parents were in high school band, and even up until they died they still enjoyed listening to band music, marching bands. Music is an important part of human life. Again, I'm so sorry that you've had your dream taken from you, but perhaps it happened only to lead you on a slightly varied path. Perhaps you can somehow share your love with others, to teach them? It's not always the young ones that need attention and lessons. I need to go pay attention to my 3 y.o. I haven't gotten online during the day in quite awhile, and I'm beginning to feel guilty.