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Narcolepsy Or What?


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#1 Razzyirt

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Posted 02 November 2012 - 02:34 PM

Hi All;

This is a first post for me and I have not been diagnosed with narcolepsy...yet?...so, here's my back story, and I am honestly looking for your opinions. I find I find out more talking to those who actually live with a condition, then talking to doctors. So, here's my long and convoluted back story, and how I ever ended up considering narcolepsy as a possible answer.

Ironically....I just fell asleep there, after having a 14 hour night of sleep. I didn't take the modafinil this morning...but I will get back to that.

A few months ago I went for a respiratory test to see if I have asthma. I have shortness of breath and a difficult time exercising because of it. While I was there, they did one of those tests about how sleepy you are and I scored through the roof, so they said I must have sleep apnea.

Now, I'm a 26 year old woman, who has dealt with her fair share of health issues throughout her life (according to doctors, wayyy more than someone my age should). Bit of back story. I have a list of medical issues a mile long, with several rare autoimmune diseases. I also spent a year and a half in and out of hospitals recovering from an infection that went through my head from a jaw surgery I had. 15 surgeries from that. You name it, I've had it (or so it feels). So, I'm no stranger to the medical word. I also happen to work in health care, just graduated, as a Dietitian (so, you could say, I also know about healthy eating :P)

Back pedal to before this respiratory test a few years. I went hyperthyroid from Grave's Disease and lost a ton of weight. Before that I was always the same weight, ridiculously active and ate well. Then the yo-yo-ing started. So, I lost all this weight from being hyperthyroid (45lbs, and I wasn't overweight to begin with). Then they got my thyroid under control and I returned to my regular weight. All seemed good.

Then I started noticing I was even more tired than usual (I have always been tired, but now, getting worse). The docs told me it was my body getting used to not being hyperthyroid again. 6 months pass. I'm still exhausted. Then I started gaining weight at an alarming rate. Again, docs said, it had to be from my thyroid. I was getting blood tests every few weeks, to keep an eye on that and adjust meds as needed...so, I didn't see how that could work. So I thought I would step up the exercise and watch what I was eating, cuz that had to be the issue. I started gaining around 5lbs a week. I went back to the doc to complain about the weight gain. The first doc I said told me it must be because I was eating more than I thought I was and not exercising enough. (again, I was a student in nutrition...honestly, I knew that there was no way I could be gaining that kind of weight with what I was eating).

I saw a different doctor. Got all sorts of blood tests (cortisol, testing for PCOS, blood glucose, etc.). Nothing came back positive. Meanwhile, as the months passed, I felt more and more like a slug. And the weight packed on. To the point where I am now a good 40lbs above the highest weight I had ever been and am now considered obese. Nothing I did, tried, or cried about changed the weight gain. And the sleeping got worse and worse. I went to school during the day, fell asleep the minute I got home. Slept through the weekends. Then I started falling asleep during class.

And I got the diagnosis of chronic fatigue syndrome. Man, did I ever fight that one....I felt like everyone was telling me I was crazy. But I felt like (and now feel more like than ever) that my life was falling apart.

Back to the respiratory testing...first I had ever heard about sleep apnea. And I'm super ashamed of the weight gain. So I got into my head that maybe this was the answer to all my problems, because I had some how let myself get fat, and this was a result of it, and that was why I was so tired. So, I did one of those at home over night studies, convinced myself that I had my answer and waited for the appointment with the sleep doctor.

Met up with him to get my results...low and behold, no snoring, no nothing. The test was perfectly normal. I guess I didn't even snore once. I felt deflated. Ironically, I actually wanted a disease.....just so I could have an answer! I thought, as crappy as it would be, at least this had a treatment and the potential for it to get better.

He kept asking me all sorts of questions, and this is where I found out about narcolepsy for the first time. He felt I should have more in depth testing done. I was surprised. I would never, in a million years, have considered narcolepsy.

I got in for a sleep test at the hospital within a few weeks (much to my surprise, they told me they thought it would be a good 6 months). And here's where I feel like it all fell apart again. Again, I got latched on this being the answer. I did tons of research...and it just fit. I was sooo excited (stupid, I know. To be excited about having a disease....but my life has been a living hell for years now, and I'm sick and tired of feeling like everyone thinks I'm a hypochondriac).

So, I did the overnight sleep test and the MSLT. And for the entire test...I COULD NOT SLEEP! Not a wink! The rest my life I'm lucky to stay awake, and do you think for this bloody test I could get my stupid body to fall asleep, no! I tossed and turned throughout the overnight test. Had panic attack after panic attack...the technician was horrible and kept yelling at me to sleep (her words "if I wanted the doctor to have any idea what was wrong with me, then I better cooperate and get some sleep because didn't I want to help myself?") Which just made everything worse...So, I got 3 whole hours of sleep that night.

Then for the MSLT, I was sooo nervous. You'd think with 3 hours of sleep, a person would be tired. Well, no chance. I was like hopped up on speed or something at that damn place. Doesn't help that I hate hospitals to begin with....I guess I fell asleep for one of the naps, but that was it (and it was 2 whole minutes). They called it after 4 naps and told me to go home. I was in tears. I blew the stupid thing....my chance for an answer, and I blew it!

So, I have an appointment to get all those results on November 30, but I feel like what's the use? My luck, they'll tell me I'm an insomniac. I can't see them believing me that I'm tired all the time.

Here is what I have....my question to you, is this normal of narcolepsy? Or am I going the total wrong direction?

- I sleep, a lot. I love sleep...I could easily sleep an entire day if you let me. I can sleep 14-16 hours a night, easy...and be tired enough to go back to sleep 2 hours after getting up
- I "doze" all the time throughout the day. I feel like a semi-truck of fatigue can hit me, one minute I'll be so so, the next just incredibly tired....but I don't necessarily fall asleep. I just get into this weird dozing state (half awake, half asleep) where the world is fuzzy. I have a hard time forming thoughts, talking, can't make my brain function. But I'm still technically awake.
- I can sleep a ton, be totally exhausted...and yet have a hard time falling asleep. Sometimes I feel almost jittery and anxious and I toss and turn and wake up a ton
- I don't think I have paralysis or cataplexy....but I do get this feeling, especially when I'm tired...where it feels like my limbs are moving through quick sand. I can move them, so I'm not paralyzed....but it's really hard, and I have to work super hard at it to get them to cooperate
- I also will get times where my legs just feel weak and like they aren't working right. I don't fall over, and I really don't think it's tied to laughing or being angry or anything. I find it's usually more random and like when I'm walking or something and I exert myself more

Basically, my life was turning into a living hell. I could not work full time. I struggled to even hold down the part time job I had. I could barely function, and I felt like no one believed me. Then I had this at home sleep test and talked with the first doctor. He gave me a trial dose of modafinil (one month's worth).

I feel like my life changed....all of a sudden, I felt like a human being! There I am at work...getting things done, feeling on top of the world! Then the pill would wear off, and I would feel like that semi-truck had hit me again, except worse now. Here's the thing, the modafinil only works 3-4 hours, before all the symptoms come back. And I only have a month's worth of it, so I've been trying to take it only on the days I work, or have to be coherent. It's been 2 weeks of taking it now, and I tried not taking it today cuz I have a day off....and I can't function, at all! I ended up having to take it, because I just felt sooo sh*tty that I couldn't do it. And, bang, I feel great again!

Is this normal? If I didn't have narcolepsy, would this work? (like, would this work this way on a "normal" human, or if it was in fact chronic fatigue syndrome"?)

I'm sorry for the rambling nature of this post....and the length. I'm just at my wits end. I'm scared that they are going to say that I don't have narcolepsy and then not give me any more of the modafinil...and right now, this is the only reason that I have a job and am sort of functioning (I HAVE to have this job, I will be in huge trouble if I lose it....and believe me, there was rumbling about me losing it before I started the modafinil, because I was coming in late, and sleepy....they were making comments about how I should "get more sleep" and "party less"...I don't do either, and I AM sleeping!)

Even with the modafinil....I find by Wed/Thurs I'm so exhausted anyway. I can get through work with the modafinil, but then I crash as soon as I get home. It's not much of a life....but at least I can pay my bills that way. And I'm only working 4 days a week as it is...and I'm worried that is still too much. It's getting harder to stay awake while driving. And get anything else done (like grocery shopping, or cleaning). I find I hardly have the energy to shower, or take care of myself anymore. All energy just goes to work. My hubby is great and very supportive, but I know he's getting frustrated too....

So, any thoughts? Advice? Help? Thanks!

#2 DeathRabbit

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Posted 02 November 2012 - 03:23 PM

Hi All;

This is a first post for me and I have not been diagnosed with narcolepsy...yet?...so, here's my back story, and I am honestly looking for your opinions. I find I find out more talking to those who actually live with a condition, then talking to doctors. So, here's my long and convoluted back story, and how I ever ended up considering narcolepsy as a possible answer.

Ironically....I just fell asleep there, after having a 14 hour night of sleep. I didn't take the modafinil this morning...but I will get back to that.

A few months ago I went for a respiratory test to see if I have asthma. I have shortness of breath and a difficult time exercising because of it. While I was there, they did one of those tests about how sleepy you are and I scored through the roof, so they said I must have sleep apnea.

Now, I'm a 26 year old woman, who has dealt with her fair share of health issues throughout her life (according to doctors, wayyy more than someone my age should). Bit of back story. I have a list of medical issues a mile long, with several rare autoimmune diseases. I also spent a year and a half in and out of hospitals recovering from an infection that went through my head from a jaw surgery I had. 15 surgeries from that. You name it, I've had it (or so it feels). So, I'm no stranger to the medical word. I also happen to work in health care, just graduated, as a Dietitian (so, you could say, I also know about healthy eating :P)

Back pedal to before this respiratory test a few years. I went hyperthyroid from Grave's Disease and lost a ton of weight. Before that I was always the same weight, ridiculously active and ate well. Then the yo-yo-ing started. So, I lost all this weight from being hyperthyroid (45lbs, and I wasn't overweight to begin with). Then they got my thyroid under control and I returned to my regular weight. All seemed good.

Then I started noticing I was even more tired than usual (I have always been tired, but now, getting worse). The docs told me it was my body getting used to not being hyperthyroid again. 6 months pass. I'm still exhausted. Then I started gaining weight at an alarming rate. Again, docs said, it had to be from my thyroid. I was getting blood tests every few weeks, to keep an eye on that and adjust meds as needed...so, I didn't see how that could work. So I thought I would step up the exercise and watch what I was eating, cuz that had to be the issue. I started gaining around 5lbs a week. I went back to the doc to complain about the weight gain. The first doc I said told me it must be because I was eating more than I thought I was and not exercising enough. (again, I was a student in nutrition...honestly, I knew that there was no way I could be gaining that kind of weight with what I was eating).

I saw a different doctor. Got all sorts of blood tests (cortisol, testing for PCOS, blood glucose, etc.). Nothing came back positive. Meanwhile, as the months passed, I felt more and more like a slug. And the weight packed on. To the point where I am now a good 40lbs above the highest weight I had ever been and am now considered obese. Nothing I did, tried, or cried about changed the weight gain. And the sleeping got worse and worse. I went to school during the day, fell asleep the minute I got home. Slept through the weekends. Then I started falling asleep during class.

And I got the diagnosis of chronic fatigue syndrome. Man, did I ever fight that one....I felt like everyone was telling me I was crazy. But I felt like (and now feel more like than ever) that my life was falling apart.

Back to the respiratory testing...first I had ever heard about sleep apnea. And I'm super ashamed of the weight gain. So I got into my head that maybe this was the answer to all my problems, because I had some how let myself get fat, and this was a result of it, and that was why I was so tired. So, I did one of those at home over night studies, convinced myself that I had my answer and waited for the appointment with the sleep doctor.

Met up with him to get my results...low and behold, no snoring, no nothing. The test was perfectly normal. I guess I didn't even snore once. I felt deflated. Ironically, I actually wanted a disease.....just so I could have an answer! I thought, as crappy as it would be, at least this had a treatment and the potential for it to get better.

He kept asking me all sorts of questions, and this is where I found out about narcolepsy for the first time. He felt I should have more in depth testing done. I was surprised. I would never, in a million years, have considered narcolepsy.

I got in for a sleep test at the hospital within a few weeks (much to my surprise, they told me they thought it would be a good 6 months). And here's where I feel like it all fell apart again. Again, I got latched on this being the answer. I did tons of research...and it just fit. I was sooo excited (stupid, I know. To be excited about having a disease....but my life has been a living hell for years now, and I'm sick and tired of feeling like everyone thinks I'm a hypochondriac).

So, I did the overnight sleep test and the MSLT. And for the entire test...I COULD NOT SLEEP! Not a wink! The rest my life I'm lucky to stay awake, and do you think for this bloody test I could get my stupid body to fall asleep, no! I tossed and turned throughout the overnight test. Had panic attack after panic attack...the technician was horrible and kept yelling at me to sleep (her words "if I wanted the doctor to have any idea what was wrong with me, then I better cooperate and get some sleep because didn't I want to help myself?") Which just made everything worse...So, I got 3 whole hours of sleep that night.

Then for the MSLT, I was sooo nervous. You'd think with 3 hours of sleep, a person would be tired. Well, no chance. I was like hopped up on speed or something at that damn place. Doesn't help that I hate hospitals to begin with....I guess I fell asleep for one of the naps, but that was it (and it was 2 whole minutes). They called it after 4 naps and told me to go home. I was in tears. I blew the stupid thing....my chance for an answer, and I blew it!

So, I have an appointment to get all those results on November 30, but I feel like what's the use? My luck, they'll tell me I'm an insomniac. I can't see them believing me that I'm tired all the time.

Here is what I have....my question to you, is this normal of narcolepsy? Or am I going the total wrong direction?

- I sleep, a lot. I love sleep...I could easily sleep an entire day if you let me. I can sleep 14-16 hours a night, easy...and be tired enough to go back to sleep 2 hours after getting up
- I "doze" all the time throughout the day. I feel like a semi-truck of fatigue can hit me, one minute I'll be so so, the next just incredibly tired....but I don't necessarily fall asleep. I just get into this weird dozing state (half awake, half asleep) where the world is fuzzy. I have a hard time forming thoughts, talking, can't make my brain function. But I'm still technically awake.
- I can sleep a ton, be totally exhausted...and yet have a hard time falling asleep. Sometimes I feel almost jittery and anxious and I toss and turn and wake up a ton
- I don't think I have paralysis or cataplexy....but I do get this feeling, especially when I'm tired...where it feels like my limbs are moving through quick sand. I can move them, so I'm not paralyzed....but it's really hard, and I have to work super hard at it to get them to cooperate
- I also will get times where my legs just feel weak and like they aren't working right. I don't fall over, and I really don't think it's tied to laughing or being angry or anything. I find it's usually more random and like when I'm walking or something and I exert myself more

Basically, my life was turning into a living hell. I could not work full time. I struggled to even hold down the part time job I had. I could barely function, and I felt like no one believed me. Then I had this at home sleep test and talked with the first doctor. He gave me a trial dose of modafinil (one month's worth).

I feel like my life changed....all of a sudden, I felt like a human being! There I am at work...getting things done, feeling on top of the world! Then the pill would wear off, and I would feel like that semi-truck had hit me again, except worse now. Here's the thing, the modafinil only works 3-4 hours, before all the symptoms come back. And I only have a month's worth of it, so I've been trying to take it only on the days I work, or have to be coherent. It's been 2 weeks of taking it now, and I tried not taking it today cuz I have a day off....and I can't function, at all! I ended up having to take it, because I just felt sooo sh*tty that I couldn't do it. And, bang, I feel great again!

Is this normal? If I didn't have narcolepsy, would this work? (like, would this work this way on a "normal" human, or if it was in fact chronic fatigue syndrome"?)

I'm sorry for the rambling nature of this post....and the length. I'm just at my wits end. I'm scared that they are going to say that I don't have narcolepsy and then not give me any more of the modafinil...and right now, this is the only reason that I have a job and am sort of functioning (I HAVE to have this job, I will be in huge trouble if I lose it....and believe me, there was rumbling about me losing it before I started the modafinil, because I was coming in late, and sleepy....they were making comments about how I should "get more sleep" and "party less"...I don't do either, and I AM sleeping!)

Even with the modafinil....I find by Wed/Thurs I'm so exhausted anyway. I can get through work with the modafinil, but then I crash as soon as I get home. It's not much of a life....but at least I can pay my bills that way. And I'm only working 4 days a week as it is...and I'm worried that is still too much. It's getting harder to stay awake while driving. And get anything else done (like grocery shopping, or cleaning). I find I hardly have the energy to shower, or take care of myself anymore. All energy just goes to work. My hubby is great and very supportive, but I know he's getting frustrated too....

So, any thoughts? Advice? Help? Thanks!

My first sleep study I never slept at all. That's not uncommon. That tech should have known better than to be badgering you like that. I would report her to the sleep clinic because that's extremely counterproductive behavior. Also, it's quite common for narcoleptics to experience insomnia. Narcolepsy is a pretty much a systemic breakdown of your body's natural sleeping patterns, so you'll want to sleep when you can't and not want to sleep when you need to. Also, the stimulants/nootropics tend to cause those problems as well. Narcolepsy is actually autoimmune as well, so it should have been suggested the moment you had sleep issues. But it's widely misunderstood, even by most medical professionals. My previous sleep doctor was a pulmonolgist who refused to give any N patients Xyrem because he was like, it's a depressant so it's just going to make you sleepier. Many medical professionals think N is just like Mr Bean in Rat Race. My advice in the mean time is to try sleeping less. I know that sounds like odd advice, but if you sleep too long, your body just scales back your metabolism which is going to make you feel even *BEEP*tier. You'll have to dial it in, but for myself, I need to sleep 8 hrs and 30 min. 30 minutes more, and I'm lethargic all day, 30 minutes less and I get crippling brain fog. But basically, when that time comes to get up, you need to be up and out of bed like a shot. It's tough, believe me I know. Since you have a sleep partner, maybe you could make a deal with him to help kick your ass out of bed.