4 replies to this topic

[Antonio]

Sorry its so long, just wanted to completely explain my situation.. any input would be greatly appreciated. Thanks!

For about 6 years now, I recall always feeling this sleepy, "tired' feeling.. but not muscle fatigue. It always felt like i wanted to do things physically, but my brain was switched off and I was mentally unable to do things.. like severe mental fatigue. This always went hand in hand with feeling like I had no choice but to take a nap to overcome it, or fight through it for a while then it got a little better.

The worst time was a few years ago. I would feel so sleepy and tired that I couldn't even do most things that I would normally do. I would have to just lay down, didn't matter if I fell asleep or not. Although I usually did. It was usually too overwhelming. When I would be laying down my eyes would start closing, and I would try to fight to stay awake although this hardly worked.. I then found that I would wake up very shortly after, and couldn't move. No matter what I did, I couldn't move. I had to just give in and let myself fall back asleep. Then, I would wake up shortly after usually kinda freaked out. This started happening almost daily for a while. I also always noticed that I felt like I was there but not there while I driving. I also used to hear sounds right before opening my eyes.. usually like knocking or a doorbell..

Not too long after this, I went to a Dr. and they did some blood work : Mono, TSH, CBC, Glucose which all came back fine. I was told it was " Chronic Fatigue Syndrome" and that they wanted to put me on some antidepressants for this. But, I'm thinking.. "ok.. but im not fatigue.. like physically.. its like brain fog and sleepiness" So I didn't go back. After a while the symptoms seemed to ease up a bit although it still happened.. just not as often.. until one day it came back. So I went to a different doctor which diagnosed Shift worker sleep disorder and prescribed Nuvigil. He said it that didn't work, come back and we will try antidepressants. (Whats up with all these doctors rushing to push people on antidepressants???) I felt that there was a improvement with the Nuvigil (knocked the edge off of the sleepiness ) , but it took so long to take effect (almost 2 hours) and it gave me horrible headaches, so I stopped taking it.



From that point , it seemed to kind of come and go.. I would have a lot of days where I would always be sleepy and tired, and then randomly have a day or two where i didn't feel like i had to take a nap. I even got lucky enough to experience this for a few weeks once. Then the cycle starts all over again until lately. I had gone back to the dr and tried the antidepressants because I couldn't take it anymore.. took it for a day and stopped. Gave me immediate depression . I started feeling like this is going to go on forever. I recently went back to the first doctor I saw and he wanted to do blood tests again since it had been over a year since the last ones, which again came back normal. I tried explaining everything to him again and even made a list of everything i had been experiencing and showed it to him. and NOW, he is considering a sleep study. Although I'm not sure yet. They always ask like "do you ever fall asleep at random times" or something similar and it's frustrating when you say no and try to explain to them and they just brush it off because you said no initially.

This is the list that I showed to the Dr. :

- Usually feel tired/sleepy on and off during the day
but at night time, close to regular bedtime, more awake.




-sometimes I wake up multiple times a night
- I don't get up or out of bed
- I spontaneously wake up, almost like jumping up
- sometimes just look around for a few seconds and fall back asleep within a minute or two
-- Surprisingly, when this occurs, I feel like I can wake up, mentally but physically still too tired. But, when I wake up again after, I feel physically awake but mentally tired,foggy.

-Wake up, and within an hour I feel the need to go back to sleep, or a great desire to close my eyes, (or they start closing) they start to feel heavy.
sometimes if I just sit or lay down and just close my eyes for even a few minutes while staying awake, it passes. Other times I feel like I have no choice but to take a nap to function.

-The naps are usually short but vary.. I usually feel like I cant / won't be able to fall asleep.. but laying there with my eyes close its almost as if I start dreaming before I fall asleep, seeing dream-like figures.

-When I wake up from these naps, it feels like I've slept for a few hours, but it's only been maybe 20-25 mins. I usually feel better after these naps.. but usually the "cycle" starts over after an hour or so.

-Some days I dont feel like I have to take a nap but I end up feeling strange.. almost as if I'm here but not here.. like disconnected from everything. For example if I'm driving.. I feel like im driving but at the same time feel like im not consciously driving. Then I feel some sort of startling jolt that "wakes me up" or makes me kind of jump.

-I have also experienced something very strange .. I would fall asleep and "wake up" very shortly after.. but I couldnt move.. I felt paralyzed or something.


- Issues not being able to focus on anything or pay attention.. If I'm sitting at the computer trying to research something, I end up trying to do too many things at a time or while im doing one thing im thinking about what im going to do next and picture the whole process. I later realize that I never did what I originally intended to do.

-I have also experienced trouble remembering things.. if I leave my house although I just closed the garage door.. by the time the house is out of my sight I start questioning whether I closed it or not, and I have to argue with myself about whether I remember doing it or if I'm just picturing myself doing it because I'm thinking about it. (thats just one example)

-Sometimes at the end of the day I can't recall what I did at certain times of the day.


I've also lately been experiencing something weird.. around the times that I feel sleepy or tired.. If I'm out at a store or somewhere or generally doing something.. walking around then I stop. I get this weird feeling like almost a wavy floaty feeling.. like rubbery legs. and i feel like I might fall down if I don't start moving again.. If I sit , it gets worse.. ?? Sometimes this feels like a body shudder or something.. you know, like when you see something disturbing you get that internal shuddery feeling?? it feels like i can still hear and see everything, but I can't do anything for a few seconds. I've had the feeling a few times while walking and I had to nearly stop for a few seconds. I thought maybe cataplexy, but it doesn't sound like the normal cataplexy triggered by emotion that most people get.

I don't know what to think anymore.. Does this sound like N or IH or anything similar to anyone??

I don't know if this matters or not but I was recently put on Lisinopril for blood pressure, and I noticed when I take this.. i wake up more frequently but with a super restless feeling like i cant go back to sleep.. and then i have hell trying to get out of bed in the morning.. more so than i already do

[NikkiD]

Welcome to the boards Antonio! Like most people say around here.. I'm not a medical professional, so all I can give is my opinion and share some experiences. It definitely sounds like N or another sleeping disorder. A sleep study and an MSLT (not sure if your doctor recommended this as well) would be really good to see what's going on. Be firm with your doctor, don't let anything slip through the cracks. I've been sleepy/tired since elementary (now in university) but only in the past few years has it started interfering with day-to-day life. I talked to my GP about it a few years ago, and was told to get more exercise and eat better. I did, but still got sleepier. Did blood tests, everything was normal. I let it go for awhile, but then I started having sleep paralysis and hallucinations. Long story short, 2 years, 3 neurologists and 2 MSLTs later I'm on medication and close to an 'official' diagnosis (waiting for my follow up for the results, hopefully in the next couple of weeks.)

And I can relate to this: "They always ask like "do you ever fall asleep at random times" or something similar and it's frustrating when you say no and try to explain to them and they just brush it off because you said no initially." I've only very occasionally fallen asleep 'randomly'. But 95% of the time I take enough naps so that I don't completely shut down at random times. This doesn't mean you don't have a problem, and hopefully your doctor realizes that (the original neurologist I saw pretty much blew me off because of this, and I hadn't experienced cataplexy at that time.)

As for the 'shuddery' feelings you're not sure are cataplexy.. well, I'm not sure either, but from personal experience and from other postings in this forum, there isn't always necessarily an emotional trigger. Sometimes for me, if I go too long without sleeping, or if I've been out and about for more than a couple of hours, my knees will start buckling, and I find it difficult to move. Sometimes I'll be trying to talk to someone and my mouth just completely shuts down, I can't move (sometimes my head will slump). I'm not sure if the sensation I feel when this happens is the same thing as your shuddery feeling. And I'm not sure if that's cataplexy or just my body trying to fall asleep. Either way it's caused many cowokers to ask if I need a doctor! Other people on the forum have posted about having internal shivers while experiencing cataplexy, so it could be possible. On a side note, it took a few months until I noticed mild cataplexy when I laughed. It can be as mild as drooping eyelids and mild weakness in my hands/arms, and only extremely rarely do I end up on the floor (3 times, if you count the one time my boyfriend caught me before I fell )

And sleep paralysis, the waking up and not being able to move, sucks, but I have to say that it can be the least bothersome thing about N. Hopefully it doesn't happen too often. I've mostly gotten used to it, although I still get rattled when it happens when I wake up and hallucinate at the same time.

Memory problems abound around here. Some people have it worse than others, but it comes with the brain fog. I once had to ask my boss three times in a row where I had to sign and initial some papers. Oi... And confusing dreams (or thoughts of doing something) with reality is something I do too. Like being sure that I sent an email or called someone when I really didn't. Our poor dog went the day without food because I 'heard' my boyfriend feeding her in the morning, even though he didn't.

On my best days I can function with one nap in the afternoon. On regular days if I only take my one nap I don't make it through a whole shift at work, and usually have to put my head down and rest often (I rarely completely fall asleep, but I'll be on the border and jump at any noise). Some days I have to take a nap every two hours. I'll crash for 15-30 minutes, and feel ok for about an hour, start getting sleepy again etc. etc. I tend to have a couple of good days a month, going from good to regular to bad to really bad to regular to good. All this to say that the nap 'cycles' you talk about are very common in PWN or other sleeping disorders.

Wow, just realized how much I wrote
Hope this helped in some small way... I know it helps me to write about what I'm going through. And just writing this has helped keep me awake at work.
Take things one day at a time and don't be afraid to ask for (or accept) help.

[Enginerd]

I was told it was " Chronic Fatigue Syndrome" and that they wanted to put me on some antidepressants for this. But, I'm thinking.. "ok.. but im not fatigue.. like physically.. its like brain fog and sleepiness" So I didn't go back. After a while the symptoms seemed to ease up a bit although it still happened.. just not as often.. until one day it came back. So I went to a different doctor which diagnosed Shift worker sleep disorder and prescribed Nuvigil. He said it that didn't work, come back and we will try antidepressants. (Whats up with all these doctors rushing to push people on antidepressants???) I felt that there was a improvement with the Nuvigil (knocked the edge off of the sleepiness ) , but it took so long to take effect (almost 2 hours) and it gave me horrible headaches, so I stopped taking it.

I was told by my terrible GP that I might have CFS. Actually, she posed the idea to me in a question form, as if I should've been able to tell her whether or not I had CFS. When I disproved this theory with my symptoms, she tossed out the possibility of fibromyalgia in a question form, again. She seemed desperate so when I disproved that too, she tried to get me on anti-depressants regardless, telling me I might just have depression (I never appeared sad, lonely, upset, hopeless, etc. during my office visits with her) since I was insisting I was ill when clearly I wasn't. You're right--doctors really do try to prescribe anti-depressants like they're candy. This happened especially frequently during my undergrad years. Anytime anyone I knew went to the student health center, they came out with a diagnosis of "anxiety" or "depression" and got anti-anxiety medication or anti-depressants...because clearly, all ~18 - 22-year-olds have mental disease if their stomach hurts and they have a headache.

Thank goodness for great health insurance, because I ignored her recommendation, went to a sleep specialist on my own, and eventually learned I have narcolepsy.

If you got a headache with Nuvigil right away, your dose was likely too high. My sleep specialist thought I was so fatigued, she prescribed the max dose (250mg) right off the bat, and I got a terrible splitting headache the first day. I tried it again for the next two days, and the same thing happened. So I split the pills in half (125mg) and I didn't get a headache! I stayed on the 125mg for a week or two, then titrated myself up to 250mg, and I didn't have any problems. This might not work for everyone, but just my two cents.

I hope you figure out what's going on soon. Blood pressure medication tends to disturb sleep and cause nightmares. It also causes drowsiness. Your issues with waking up in the morning probably stem from not sleeping as well now that you're on Lisinopril. I'm glad it sounds like you're getting a sleep study soon--you sure need it! To ensure you get the nap study (MSLT), when they ask if you fall asleep at random times, mention that you feel waves of fatigue during the day, which doesn't necessarily mean you're falling face-first into a bowl of spaghetti you're eating, but that you've been combating this fatigue with daily naps. That way, you're not saying, "no, I don't fall asleep at random times", and potentially failing to trigger anything in their medical brains. The fact that you take naps every day should suggest that you may already be self-treating narcolepsy, if you do have it.

Keep us posted!

[Antonio]

Welcome to the boards Antonio! Like most people say around here.. I'm not a medical professional, so all I can give is my opinion and share some experiences. It definitely sounds like N or another sleeping disorder. A sleep study and an MSLT (not sure if your doctor recommended this as well) would be really good to see what's going on. Be firm with your doctor, don't let anything slip through the cracks. I've been sleepy/tired since elementary (now in university) but only in the past few years has it started interfering with day-to-day life. I talked to my GP about it a few years ago, and was told to get more exercise and eat better. I did, but still got sleepier. Did blood tests, everything was normal. I let it go for awhile, but then I started having sleep paralysis and hallucinations. Long story short, 2 years, 3 neurologists and 2 MSLTs later I'm on medication and close to an 'official' diagnosis (waiting for my follow up for the results, hopefully in the next couple of weeks.)

And I can relate to this: "They always ask like "do you ever fall asleep at random times" or something similar and it's frustrating when you say no and try to explain to them and they just brush it off because you said no initially." I've only very occasionally fallen asleep 'randomly'. But 95% of the time I take enough naps so that I don't completely shut down at random times. This doesn't mean you don't have a problem, and hopefully your doctor realizes that (the original neurologist I saw pretty much blew me off because of this, and I hadn't experienced cataplexy at that time.)

As for the 'shuddery' feelings you're not sure are cataplexy.. well, I'm not sure either, but from personal experience and from other postings in this forum, there isn't always necessarily an emotional trigger. Sometimes for me, if I go too long without sleeping, or if I've been out and about for more than a couple of hours, my knees will start buckling, and I find it difficult to move. Sometimes I'll be trying to talk to someone and my mouth just completely shuts down, I can't move (sometimes my head will slump). I'm not sure if the sensation I feel when this happens is the same thing as your shuddery feeling. And I'm not sure if that's cataplexy or just my body trying to fall asleep. Either way it's caused many cowokers to ask if I need a doctor! Other people on the forum have posted about having internal shivers while experiencing cataplexy, so it could be possible. On a side note, it took a few months until I noticed mild cataplexy when I laughed. It can be as mild as drooping eyelids and mild weakness in my hands/arms, and only extremely rarely do I end up on the floor (3 times, if you count the one time my boyfriend caught me before I fell )

And sleep paralysis, the waking up and not being able to move, sucks, but I have to say that it can be the least bothersome thing about N. Hopefully it doesn't happen too often. I've mostly gotten used to it, although I still get rattled when it happens when I wake up and hallucinate at the same time.

Memory problems abound around here. Some people have it worse than others, but it comes with the brain fog. I once had to ask my boss three times in a row where I had to sign and initial some papers. Oi... And confusing dreams (or thoughts of doing something) with reality is something I do too. Like being sure that I sent an email or called someone when I really didn't. Our poor dog went the day without food because I 'heard' my boyfriend feeding her in the morning, even though he didn't.

On my best days I can function with one nap in the afternoon. On regular days if I only take my one nap I don't make it through a whole shift at work, and usually have to put my head down and rest often (I rarely completely fall asleep, but I'll be on the border and jump at any noise). Some days I have to take a nap every two hours. I'll crash for 15-30 minutes, and feel ok for about an hour, start getting sleepy again etc. etc. I tend to have a couple of good days a month, going from good to regular to bad to really bad to regular to good. All this to say that the nap 'cycles' you talk about are very common in PWN or other sleeping disorders.

Wow, just realized how much I wrote
Hope this helped in some small way... I know it helps me to write about what I'm going through. And just writing this has helped keep me awake at work.
Take things one day at a time and don't be afraid to ask for (or accept) help.

Thanks for the welcome! Sorry for not introducing myself first lol. Your reply definitely helped! At least I know I'm not crazy for thinking it could be N or some other sleep disorder. I've been thinking it for a while, but it's like everything thinks I'm making it up if I try to talk to them about it. It's definitely helpful to find out from others that my symptoms sound similar in a way to theirs!. It's like people have a single image of people with N. That being people that just randomly drop to the ground and fall asleep. They don't realize how much symptoms can vary! lol

Yeah, about the cataplexy.. It seems hard to figure out if that is what it is being how "mild" it seems, because everyone seems to describe it differently. I guess I will find out one way or another though lol.

Keep us posted about your results!, Good luck!

[Antonio]

I was told by my terrible GP that I might have CFS. Actually, she posed the idea to me in a question form, as if I should've been able to tell her whether or not I had CFS. When I disproved this theory with my symptoms, she tossed out the possibility of fibromyalgia in a question form, again. She seemed desperate so when I disproved that too, she tried to get me on anti-depressants regardless, telling me I might just have depression (I never appeared sad, lonely, upset, hopeless, etc. during my office visits with her) since I was insisting I was ill when clearly I wasn't. You're right--doctors really do try to prescribe anti-depressants like they're candy. This happened especially frequently during my undergrad years. Anytime anyone I knew went to the student health center, they came out with a diagnosis of "anxiety" or "depression" and got anti-anxiety medication or anti-depressants...because clearly, all ~18 - 22-year-olds have mental disease if their stomach hurts and they have a headache.

Thank goodness for great health insurance, because I ignored her recommendation, went to a sleep specialist on my own, and eventually learned I have narcolepsy.

If you got a headache with Nuvigil right away, your dose was likely too high. My sleep specialist thought I was so fatigued, she prescribed the max dose (250mg) right off the bat, and I got a terrible splitting headache the first day. I tried it again for the next two days, and the same thing happened. So I split the pills in half (125mg) and I didn't get a headache! I stayed on the 125mg for a week or two, then titrated myself up to 250mg, and I didn't have any problems. This might not work for everyone, but just my two cents.

I hope you figure out what's going on soon. Blood pressure medication tends to disturb sleep and cause nightmares. It also causes drowsiness. Your issues with waking up in the morning probably stem from not sleeping as well now that you're on Lisinopril. I'm glad it sounds like you're getting a sleep study soon--you sure need it! To ensure you get the nap study (MSLT), when they ask if you fall asleep at random times, mention that you feel waves of fatigue during the day, which doesn't necessarily mean you're falling face-first into a bowl of spaghetti you're eating, but that you've been combating this fatigue with daily naps. That way, you're not saying, "no, I don't fall asleep at random times", and potentially failing to trigger anything in their medical brains. The fact that you take naps every day should suggest that you may already be self-treating narcolepsy, if you do have it.

Keep us posted!

I had that experience too! They ask you whether you think you have this or not and its like. ??? You're the doctor, not me! Frustrating, huh? I'm in a bad situation though, no health insurance at the moment. I went to the hospital's sleep clinic to talk to someone once, and they said a sleep study was about $2500. Yikes! But my doctor hasn't yet specified what he wants to do. He just mentioned a sleep evaluation, but didn't say any more, like mentioning the MSLT or anything. I'll have to bring it up next time! It was so weird though because this past time, when we were talking about a sleep study and I was showing him my list of symptoms, he was like " yeah we need to get that sleep evaluation done, so we can treat this narc. , we need to get this blood pressure under control first." I was thinking like "Uh, what just happened??" lol

My biggest concern is about the sleep study though. Since some of my symptoms used to be worse a few years ago, although they are still there now, along with some new ones, what if the sleep study doesn't show anything now? What if it would've earlier? What would happen then? I've heard of people having to have 3 sleep studies for something to show up! Definitely can't afford that out of pocket!!

The nuvigil I had was 150mg if I remember correctly. It would feel like my head was being squeezed. But for that amount of discomfort, it didn't help that much. I recently tried taking it again that I had leftover and had similar issues. Really bad squeezing headache, made me feel disconnected, ( i felt awake but in a fog or something) , then that night I had bad stomach pain and lightheadedness. It was weird!