17 replies to this topic

[trying_to_cope]

Im not sure if this is the right section for this but I'm just trying to find out if other people with this feel like me. For starters I feel like I am losing my mind. I walk into a room over and over again and can not remember what I was looking for or doing. I have trouble talking and keeping a hold of any type of concentration anymore. Its becoming too much. I have depression and anxiety in the first place and this symptom isa seriously making me doubt my sanity. And even though I have an under active thyroid, which my levels are fine btw, I am literally freezing almost ALL the time, like cold to the core that my bones are achy and cold. I feel terrible like this all the time. On my bad days Im soooo tired that I can barely function to get out of bed because my body is so drained of energy that it hurts in an achy type way to even move. On the days that I can not fight the tiredness there is this strange, fluttery, light headed kind of feel in my head that I get and I sort of see double and then have to close my eyes, well really they close on their own actually. There are even times when I am standing up and I won't be able to fight the sleep and I'll either start to fall asleep or actually fall asleep, because my knees will buckle and "wake me up" and Im standing there like you have got to be kidding me?!?!?!?!? And the nights are the only times I might actually feel semi normal, which makes no sense to me. I have no trouble falling asleep if I try though but I have no sleep attacks usually at night unless im not on medicine or it has been just that bad of a day. And at night it seems like once I am sleeping that Im up seriously almost every hour maybe every two hours depending on how long Im awake in between, sometimes I will only be up for a little bit like 5 minutes but it never seems to exceed a half hour. I am currently on Nuvigil, which worked pretty well at first, but now sadly Im starting to notice that its not helping like it used to. Thats all Im on for this as of now though. I've had sleep studies and was given the diagnosis of Narcolepsy. I hate feeling like this and I am having a lot more anxiety now because of all this. This is a total jumbled mess of thoughts together, but if I don't hurry up and get it out I will seriously forget, like no exagerating. (sp) I think I got the point across though, points rather. I just need to know if anyone else feels like this. I am newly diagnosed and scared and worried that I am going to feel like this and feel terrible forever. Or is there something else wrong with me too?!?!? Yeah that I am going crazy and I have partially lost my mind!!! Please HELP. Many THANKS in advance even if your telling me Im nuts because at least I'll know right?!?

[Hank]

Im not sure if this is the right section for this but I'm just trying to find out if other people with this feel like me. For starters I feel like I am losing my mind. I walk into a room over and over again and can not remember what I was looking for or doing. I have trouble talking and keeping a hold of any type of concentration anymore. Its becoming too much. I have depression and anxiety in the first place and this symptom isa seriously making me doubt my sanity. And even though I have an under active thyroid, which my levels are fine btw, I am literally freezing almost ALL the time, like cold to the core that my bones are achy and cold. I feel terrible like this all the time. On my bad days Im soooo tired that I can barely function to get out of bed because my body is so drained of energy that it hurts in an achy type way to even move. On the days that I can not fight the tiredness there is this strange, fluttery, light headed kind of feel in my head that I get and I sort of see double and then have to close my eyes, well really they close on their own actually. There are even times when I am standing up and I won't be able to fight the sleep and I'll either start to fall asleep or actually fall asleep, because my knees will buckle and "wake me up" and Im standing there like you have got to be kidding me?!?!?!?!? And the nights are the only times I might actually feel semi normal, which makes no sense to me. I have no trouble falling asleep if I try though but I have no sleep attacks usually at night unless im not on medicine or it has been just that bad of a day. And at night it seems like once I am sleeping that Im up seriously almost every hour maybe every two hours depending on how long Im awake in between, sometimes I will only be up for a little bit like 5 minutes but it never seems to exceed a half hour. I am currently on Nuvigil, which worked pretty well at first, but now sadly Im starting to notice that its not helping like it used to. Thats all Im on for this as of now though. I've had sleep studies and was given the diagnosis of Narcolepsy. I hate feeling like this and I am having a lot more anxiety now because of all this. This is a total jumbled mess of thoughts together, but if I don't hurry up and get it out I will seriously forget, like no exagerating. (sp) I think I got the point across though, points rather. I just need to know if anyone else feels like this. I am newly diagnosed and scared and worried that I am going to feel like this and feel terrible forever. Or is there something else wrong with me too?!?!? Yeah that I am going crazy and I have partially lost my mind!!! Please HELP. Many THANKS in advance even if your telling me Im nuts because at least I'll know right?!?

Yes- I have felt what you describe. Others have as well. You are not crazy. As you begin to understand your symptoms, you will not be so confused by them.

"there is this strange, fluttery, light headed kind of feel in my head that I get and I sort of see double and then have to close my eyes, well really they close on their own actually."

I experience something similar and you describe it better than I have. I have identified it as a type of Cataplexy I experience. I read up on it- Cataplexy can cause double vision because the eyes are controlled by muscles. Drooping or closed eye lids also.

Right now it all seems like such a mystery, but you will figure it out bit by bit. You are definitely not crazy, you are just trying to understand a complicated medical disorder. Try being a bit easier on yourself- I have a hard time with that also.

[MINItron]

I have been having symptoms of Narcolepsy for about ten years or so (at least). I have always been smart. I was in the gifted program in junior high, and graduated high school third in my class. Now after ten years of sleep deprivation (even though I sleep plenty) I live in a fog. My short term memory is shot, and I have a horrible trying to focus on anything that doesn't really, really interest me. The lack of quality sleep just doesn't allow the brain the down time it needs to rest. When you are in REM all night your brain is pretty much as active as it is when you are awake. Your sleep is easily disturbed by any little thing so you wake up a lot. Most nights I can sleep about six hours. After that I start dreaming myself awake every 15 minutes. The only way I can sleep for longer is if I am utterly exhausted when I go to bed.

It is possible that some psychiatric help or even just counselling could help you get past the added anxiety that you are experiencing due to your diagnosis. People don't die from narcolepsy, but it makes you feel like crap. There are many avenues available to help you feel better, and often it takes a long time to figure out the right one for you.

[trying_to_cope]

Thats good that I am not alone with feeling like that though. It makes me feel a little better knowing this. Thank you so much for all the advice and the encouragement. Its helpful. My mom is one of my biggest supporters and shes wonderful but since she doesnt know exactly how I feel sometimes I feel like she doesn't understand the extent of how terrible i feel. She understands as best she can though and i am grateful for that and her. But people just think "Oh people with narcolepsy just fall asleep all over the place, whats the big deal?" But like I try to tell people its SO MUCH more than that it's almost unbelievable.

Some of the other things I had talked about like the being freezing cold a majority of the time and the being soo tired and out of energy it almost in a sense hurts to move, does anyone have anything similar to those two things or may these be unrelated? Thanks in advance and have a Happy Thanksgiving everyone . Just what we need tryptophan from the turkey to make us more sleepy. LoL

[SleepyRaffie]

I too walk into rooms and cannot remember why. It happens all the time. The brain fog can make it difficult for me to perform mundane tasks and sometimes when I am really out of it I cannot figure out how to do things that I do on a regular basis. MY microsleeps have given me minor amusement. I have found kale in the freezer, and I came out of one with one hand on the microwave door and the other putting a bag of sugar in it. Yes, sometimes I feel a bit crazy too. I am usually very cold and before I started Xyrem my joints ached daily. It is entirely possible that those symptoms are related. If you are concerned you could investigate further.

[trying_to_cope]

I too walk into rooms and cannot remember why. It happens all the time. The brain fog can make it difficult for me to perform mundane tasks and sometimes when I am really out of it I cannot figure out how to do things that I do on a regular basis. MY microsleeps have given me minor amusement. I have found kale in the freezer, and I came out of one with one hand on the microwave door and the other putting a bag of sugar in it. Yes, sometimes I feel a bit crazy too. I am usually very cold and before I started Xyrem my joints ached daily. It is entirely possible that those symptoms are related. If you are concerned you could investigate further.

Did the Xyrem seem to help the being cold or no?

[J718]

You're not going crazy but yes, narcolepsy will definitely make you feel like you are. At my worst point (pre-diagnosis) a quack of a neurologist I saw told me that maybe my sleep was fine and what I really needed was a stay in the mental ward of the hospital she was affiliated with! I was outraged but at the same time it almost seemed like a good idea. I didn't know what the hell I was doing half the time. I would suddenly find myself in the ladies' room at work sometimes and I couldn't remember how I got there. I took notes every single time my bosses talked to me because I'd forget everything they said by the time I walked back to my desk. I did (and still do) start to fall asleep while I'm standing up. It happened once while I was waiting for my drink at Starbucks. Everyone around me saw me stumble and probably thought, Damn, that woman REALLY needs coffee.

I also have depression (I've had it since the womb, I think! It runs in my family) and some anxiety too. My anxiety got worse once the extreme tiredness started because I was always scared of how I would make it through the day...and without looking like a clueless idiot. I'm also much more alert at night, which is so frustrating. In a perfect world, I would go to bed at midnight/one a.m. and get up around 11 a.m.

Maybe you should experiment with different drugs? I tried Nuvigil and Provigil and they didn't help at all; I might as well have been taking Flintstone vitamins. I really wanted them to work because I didn't want to have to take traditional stimulants but it just wasn't enough. I take Adderall now and that's more helpful. It's not like I feel fantastic but at least I'm more clear-headed. Less dumb, less nuts. I'm not sure what to make of the coldness and aches because I'm always really hot. Though I have to say that on my really bad days, the tiredness is so extreme that I feel the same way I do when I'm coming down with the flu. Exhausted but almost like I have the chills too. Is that kind of how you're feeling?

[trying_to_cope]

You're not going crazy but yes, narcolepsy will definitely make you feel like you are. At my worst point (pre-diagnosis) a quack of a neurologist I saw told me that maybe my sleep was fine and what I really needed was a stay in the mental ward of the hospital she was affiliated with! I was outraged but at the same time it almost seemed like a good idea. I didn't know what the hell I was doing half the time. I would suddenly find myself in the ladies' room at work sometimes and I couldn't remember how I got there. I took notes every single time my bosses talked to me because I'd forget everything they said by the time I walked back to my desk. I did (and still do) start to fall asleep while I'm standing up. It happened once while I was waiting for my drink at Starbucks. Everyone around me saw me stumble and probably thought, Damn, that woman REALLY needs coffee.

I also have depression (I've had it since the womb, I think! It runs in my family) and some anxiety too. My anxiety got worse once the extreme tiredness started because I was always scared of how I would make it through the day...and without looking like a clueless idiot. I'm also much more alert at night, which is so frustrating. In a perfect world, I would go to bed at midnight/one a.m. and get up around 11 a.m.

Maybe you should experiment with different drugs? I tried Nuvigil and Provigil and they didn't help at all; I might as well have been taking Flintstone vitamins. I really wanted them to work because I didn't want to have to take traditional stimulants but it just wasn't enough. I take Adderall now and that's more helpful. It's not like I feel fantastic but at least I'm more clear-headed. Less dumb, less nuts. I'm not sure what to make of the coldness and aches because I'm always really hot. Though I have to say that on my really bad days, the tiredness is so extreme that I feel the same way I do when I'm coming down with the flu. Exhausted but almost like I have the chills too. Is that kind of how you're feeling?

Sort of. Its so hard to explain how I feel sometimes. All I know is I feel terrible 85% of the time and Im really fed up with how I feel. This is a terrible terrible thing to have. I know other people in the world have more severe things wrong with them and that I am grateful for but on my bad days I honestly would rather be dead than feel like this most of the time. I mean I would never actually hurt myself nor would I do that to my kids but if one morning by Gods doing I just didnt wake up I wouldn't mind that so much.

[SleepyRaffie]

Did the Xyrem seem to help the being cold or no?

Hmmm... I still get really cold, but I have dropped over 20lbs. on Xyrem so that is also a factor. It wasn't that "wow I lost weight without changing anything." It was total appetite loss. I actually log my food to make sure I am eating enough.

[Hank]

Hmmm... I still get really cold, but I have dropped over 20lbs. on Xyrem so that is also a factor. It wasn't that "wow I lost weight without changing anything." It was total appetite loss. I actually log my food to make sure I am eating enough.

Thank you for saying that. I am struggling to keep my weight up. A side effect of Adderall is appetite loss. Since on Xyrem, I have lost weight in addition to that. I have never been overweight, so I am now on the "too thin" side. Is there anything specific you have done to manage your appetite and weight? Thanks for any tips.

[SleepyRaffie]

Thank you for saying that. I am struggling to keep my weight up. A side effect of Adderall is appetite loss. Since on Xyrem, I have lost weight in addition to that. I have never been overweight, so I am now on the "too thin" side. Is there anything specific you have done to manage your appetite and weight? Thanks for any tips.

Unfortunately I have not found a good solution yet. Sometimes I forget to eat. At times I feel like I do not have a stomach. I try to make a high calorie protein shake every day. I still am under weight maintenance calories so I might end up making two a day. It is not the ideal solution, but at this point it is what it is. I am not willing to give up Xyrem just to get my appetite back. I have found that I am able to eat more in one sitting than I was able to at first. That helps. There have been a few days that I have resorted to junk food just to get a lot of calories in a small portion, but that is definitely not a route I want to go down regularly. I will let you know if I come up with anything else. My sister in law suggested a weight gain powder. Sigh.

Most days I log everything I put in my mouth so that I am sure I meet nutritional minimums. At least I know my body has what it needs to function. How I am ever going to get 2000ish calories in is still a mystery.

[cloudtalk]

I think that getting too cold or too hot can be a symptom of narcolepsy. As I understand it, narcolepsy occurs because your immune system messed up and killed off the cells in your brain that produced the neurotransmitter Orexin, which helps to regulate not only sleep/wakefulness, but also body temperature. I don't remember where I originally read about the body temperature thing, but here is a link if you want to read more about that: http://www.ncbi.nlm....pubmed/20854137

Scientists have actually developed a nasal spray of Orexin, which would probably help those of us with narcolepsy tremendously, but unfortunately they are still only using it on monkeys and it will likely be many years before we get access to it. I think this is terrible, but I guess that because narcolepsy is rare and not deadly, there's not a huge push to provide a solution. But, maybe one day! Here's an article about it: http://www.wired.com...eep_deprivation . I feel really pissed off after reading about that again, but I guess we just gotta play the cards we're dealt.

It seems to me that for now the best treatment is Xyrem at night and stimulants during the day, though those come with their own unpleasant side effects. I'd also recommend researching narcolepsy on your own to better understand what is happening to you, and if you are struggling, therapy to help cope with the difficulties that you must learn to deal with. I think you'll be okay, but it won't be easy. That's how it's been for me, anyway. Good luck.

[Megssosleepy]

I too walk into rooms and cannot remember why. It happens all the time. The brain fog can make it difficult for me to perform mundane tasks and sometimes when I am really out of it I cannot figure out how to do things that I do on a regular basis. MY microsleeps have given me minor amusement. I have found kale in the freezer, and I came out of one with one hand on the microwave door and the other putting a bag of sugar in it. Yes, sometimes I feel a bit crazy too. I am usually very cold and before I started Xyrem my joints ached daily. It is entirely possible that those symptoms are related. If you are concerned you could investigate further.

I have also found I am not as cold as I was before starting Xyrem... Never realized the two were connected. ... I too find some amusement with my micro sleeps (just not the ones where I have been driving!)

[Megssosleepy]

I also have depression (I've had it since the womb, I think! It runs in my family) and some anxiety too. My anxiety got worse once the extreme tiredness started because I was always scared of how I would make it through the day...and without looking like a clueless idiot. I'm also much more alert at night, which is so frustrating. In a perfect world, I would go to bed at midnight/one a.m. and get up around 11 a.m.

If you havent tried Xyrem I would suggest that. I too had been depressed "since the Womb" lol and now that I am finally getting real sleep, my depression/anxiety has melted away. It has been a long getting used to Xyrem but, I cannot even begin to describe how thankful I am for it!! I am also like you in the fact that I used to be a night person... I worked in the restaurant industry... stayed up till 3am got up around 2pm, when I joined corporate america I realized how bad my N actually was... now that I take Xyrem I even get up early on the weekends! Its great!

[Megssosleepy]

Unfortunately I have not found a good solution yet. Sometimes I forget to eat. At times I feel like I do not have a stomach. I try to make a high calorie protein shake every day. I still am under weight maintenance calories so I might end up making two a day. It is not the ideal solution, but at this point it is what it is. I am not willing to give up Xyrem just to get my appetite back. I have found that I am able to eat more in one sitting than I was able to at first. That helps. There have been a few days that I have resorted to junk food just to get a lot of calories in a small portion, but that is definitely not a route I want to go down regularly. I will let you know if I come up with anything else. My sister in law suggested a weight gain powder. Sigh.

Most days I log everything I put in my mouth so that I am sure I meet nutritional minimums. At least I know my body has what it needs to function. How I am ever going to get 2000ish calories in is still a mystery.

The weight gain shake really does work... and its pretty easy to dress it up... add pb and bananas... choc syrup ect... Its what finally started helping me... once it ran out I lost all the weight I gained

[SleepyRaffie]

The weight gain shake really does work... and its pretty easy to dress it up... add pb and bananas... choc syrup ect... Its what finally started helping me... once it ran out I lost all the weight I gained

Thanks!

[Gabby]

I haven't been on for quite a while but to the originator of this topic... you could have been writing my story. Especially the part about going into a room and not know why you went in there. And I wanted to scream when people would say, 'Oh, everyone does that'. My doctor explained that concentration is going to be one of my biggest issues. I suffer from depression and anxiety too. The meds for that and the meds for N counteract each other so my two doctors have to work with each other which is rare these days. I drop things, I have trouble forming words, I stand in my kitchen and realize that I've fallen asleep on my feet as I'm falling over or bang my knees on the cupboard when they buckle. I've ALWAYS been cold but I know that when I get those silly chills that I have about 10 minutes before the sleepiness is uncontrollable. When everyone else is going to bed I find that I am finally awake and I'll be darned if I'm going to waste that energy by climbing back into bed. But some time during those late hours I might sit down and not realize that I've fallen asleep for the night. My husband has finally learned not to take it personally when he wakes up in the morning and finds me sitting on the couch, sound asleep. One night when he wasn't here I sat with a late dinner in my lap and fell asleep. I slept sitting straight up for 9 hours and never spilled my mashed potatoes and gravy. My head was the only thing that had fallen. Ouch. I can smile now but I cried a lot in the beginning. Okay, sometimes I still cry but Someone here said to give yourself a break. Not nearly as easy as it sounds. But that will be the turning point. You'll be able to look at things more positively. But I still have to remind myself every single day that I'm dong the best that I can. My husband and I see a councilor once in a while to bring things back into perspective. That helps. Good luck.

Gabby

[MINItron]

I was commiserating with a pregnant friend this weekend that narcolepsy brain is very similar to pregnancy brain. Only a pregnant woman gets her brain back after she gives birth.