12 replies to this topic

[Melanie]

Hello everyone! I'm new here so I apologize if this is a repeated topic. I tried skimming through the posts but didn't see much.

My situation is that 1-2 days a week I have a much harder time than usual getting out of bed. I was diagnosed with narcolepsy a couple weeks ago. I always have a hard time getting out of bed and getting to work on time but there is always a couple days that I can't get out of bed at all. Its a different feeling than normal exhaustion. When I wake up I feel like my entire body is made out of lead. I can move, but barely. If I get up my head is so heavy I have to lay back down. This feeling lasts all day. So I end up skipping work and sleeping the day away. I have to push so hard just to get up at 5:30pm when my boyfriend gets home. It almost reminds me of sleep paralysis but the difference is I can move, its just very hard, and it last at least 8 hours. I'm very lucky that I still have my job at this point but if it continues I can't imagine I will much longer.

I was wondering if anyone else has experienced this and if so is there anything that can be done? I have a few more weeks before I see my doctor again so I'll be sure to ask him when I see him but until then just wondering what your thoughts were.

Thanks everyone

[zzzz]

hello,

sorry to hear you're struggling. i hope you can find enough energy, strength so you can keep your job and can continue to get through everything.
hope your doctor can help you with these symptoms.
are you on medication?


what you call 'head made out of lead', i think i know what you are feeling when you're suffering from it.
my head often feels as if it is in need of a big bucket of caffeine. (especially now that i gave up caffeine/coffee a couple of months ago, haha)
when my head is like that, it feels very 'clouded' and heavy. sometimes i wake up with it and then it lasts for what feels like the entire day.
sometimes it just hits me suddenly and then i end up feeling very tired, no energy but since i'm mostly always feeling very tired, like i have no energy, it is difficult at times to know what symptom comes with what.

i've not been diagnosed with narcolepsy. i'm having a sleep study in about a week so i'm still quite clueless when it
comes to the symptoms i've been suffering from. as i've mentioned here before, for about 85% it all leans towards narcolepsy/cataplexy
but so, i still don't really know. even after the sleep study, i might still end up being clueless.

anyway,

hope you can stay strong and get better,
wish you well!

[Melanie]

Thanks so much for your reply and support!

I am on medication. I take cymbalta and abilify for depression and xanax as needed for anxiety. I just started a week ago taking Ritalin in the mornings to help me stay awake during the day. I asked my psychiatrist if my depression medication would be causing this feeling but he said it shouldn't. Its very odd, it only happens a couple days a week. The rest of the days I'm just plain exhausted. ;-)

Good luck with your sleep test! I hope they can find some answers. I know what it feels like to not really know whats going on. My sleep doctor found the sleep apnea first but when that treatment didn't solve the tiredness issue, I went for a MSLT that diagnosed the narcolepsy. Its a struggle but I'm happy to finally know what is wrong.

Thanks again and good luck!

~Melanie

[zzzz]

Thanks so much for your reply and support!

I am on medication. I take cymbalta and abilify for depression and xanax as needed for anxiety. I just started a week ago taking Ritalin in the mornings to help me stay awake during the day. I asked my psychiatrist if my depression medication would be causing this feeling but he said it shouldn't. Its very odd, it only happens a couple days a week. The rest of the days I'm just plain exhausted. ;-)

Good luck with your sleep test! I hope they can find some answers. I know what it feels like to not really know whats going on. My sleep doctor found the sleep apnea first but when that treatment didn't solve the tiredness issue, I went for a MSLT that diagnosed the narcolepsy. Its a struggle but I'm happy to finally know what is wrong.

Thanks again and good luck!

~Melanie

hey,

reading you take medication for depression (i've been like a lab rat a few years ago, trying all different kinds of anti depressants, sadly nothing ever seems to do the trick for me, always very bad side effects, either they made me feel rather crazy/suicidal or they made me feel like a zombie, unrealistic which in a way i thought was even worse as i constantly feel very unreal, like i'm never really on this planet, as if i'm living on automatic pilot, difficult to explain)

but so, since you do take anti depressants as well, i don't know but i experienced that feeling of heavy headed during also while taking them so maybe it is why you are suffering from it. though, then you probably would suffer from it all the time i suppose.
maybe the combination of Ritalin+anxiety meds+anti depressants is the cause??

maybe it is not a common side effect and so your psychiatrist isn't aware of it and well, people react very different on medication.
i'm just telling you this because when i told my psychiatrist about me feeling very much like a zombie, head in a cloud and whatnot when i was taking Prozac, she only told me afterwards "a lot of people seem to have that"... i was a bit upset, thinking "you should've told me that sooner."
i've tried taking Cymbalta some years ago but i cannot really remember how i reacted on it. like i said, i ended up feeling like a lab rat or something

thank you very much for your support, for wishing me luck!!!
if everything goes as planned i'm having the mslt and overnight sleep study next Tuesday/Wednesday.
totally not looking forward to it uugggh but...

cheers again and welcome by the way

[HE1D1]

Hello everyone! I'm new here so I apologize if this is a repeated topic. I tried skimming through the posts but didn't see much.

My situation is that 1-2 days a week I have a much harder time than usual getting out of bed. I was diagnosed with narcolepsy a couple weeks ago. I always have a hard time getting out of bed and getting to work on time but there is always a couple days that I can't get out of bed at all. Its a different feeling than normal exhaustion. When I wake up I feel like my entire body is made out of lead. I can move, but barely. If I get up my head is so heavy I have to lay back down. This feeling lasts all day. So I end up skipping work and sleeping the day away. I have to push so hard just to get up at 5:30pm when my boyfriend gets home. It almost reminds me of sleep paralysis but the difference is I can move, its just very hard, and it last at least 8 hours. I'm very lucky that I still have my job at this point but if it continues I can't imagine I will much longer.

I was wondering if anyone else has experienced this and if so is there anything that can be done? I have a few more weeks before I see my doctor again so I'll be sure to ask him when I see him but until then just wondering what your thoughts were.

Thanks everyone

Hi! I'm Heidi and I deal with that! I thought it was my FMS/CFS! The lead comparison is exactly how I describe it. It's like someone drugged me with Benadryl or I drank alcohol, but just enough to not be able to lift my head and to weigh down my body. I really do have to call in to work and sleep all day. It sucks because I feel like an idiot calling in tired and heavy! Did you find anything out? I tested positive for the DR15 and DQ0602 DNA tests, but I didn't have REM on my MSLT. I did have a sleep latency of 6-7 minutes. I was told I have a STRONG likelihood of having N, but I have to redo my sleep test in January. I'm going to get the Zeo sleep thing and test myself before then. I really don't dream very often anyhow, so I don't know if that's the only way to have REM or not. I have had times where during my 15 minute breaks at work, I'd fall asleep and dream, so I'm guessing I'll eventually receive an official diagnosis. I also go the OK to start Ritalin or Adderal, so I'm going to get that Scrip this week. I'm hoping that if I take that early enough, I'll be able to get out of bed in time to go to work, or at least earlier in the day.

I read on here about someone having paralysis only when they had a syncopal attack. I too believe that I've only had the paralysis when I'm coming to from syncope. The last time my hubby called 911 because my eyes were open. I wonder what my chances are that it was falling asleep? I do experience very bad nausea before I go out, so I do feel like it was syncope.

Oh, I just caught that you were diagnosed with sleep apnea too! I was on the CPAP for a couple of weeks, but it was horrible and I slept even worse. I have allergies and it was making my nose itch fiercely!!

BTW, I was off ALL meds for my sleep study for 3 weeks and was still experiencing the lead weight feeling. I felt a little better after I stopped the meds, so I never resumed them, but I still can't get out of bed some days. I was on Cymbalta, Lyrica and Norpace for a while and Lyrica and Nortriptyline for a while.

Would love to hear more about your experiences!

[HE1D1]

Oh, I forgot to mention:

I was on all of my meds for POTS and CFS/FMS symptoms. Fatigue, pain, IBS, allergies, etc. The only thing I don't have is depression/anxiety. I have some slight anxiety infrequently, but it's not debilitating and I don't let it control me. I give credit for my lack of depression to God, since I feel like there's hope for feeling better. It's been over 10 years and I've been on/off disability a few times in the last few years. I'm not going to let it bring me down. If I never find an answer or relief of my symptoms, I will go down with a smile.

[Naptime?]

Thanks so much for your reply and support!

I am on medication. I take cymbalta and abilify for depression and xanax as needed for anxiety. I just started a week ago taking Ritalin in the mornings to help me stay awake during the day. I asked my psychiatrist if my depression medication would be causing this feeling but he said it shouldn't. Its very odd, it only happens a couple days a week. The rest of the days I'm just plain exhausted. ;-)

Good luck with your sleep test! I hope they can find some answers. I know what it feels like to not really know whats going on. My sleep doctor found the sleep apnea first but when that treatment didn't solve the tiredness issue, I went for a MSLT that diagnosed the narcolepsy. Its a struggle but I'm happy to finally know what is wrong.

Thanks again and good luck!

~Melanie

Hello Melanie,
I was recently diagnosed as well after years of being on cymbalta and lyrica for what they thought was fibro Myalgia .I am only 25 so i was shocked when they told me i had fibro Myalgia, then even more shocked when they told me i had narcolepsy. I understand what you are going through and i kinda wonder if the anti depressants are making your more tired. when i was on depression meds, i would have 3 major sleep attacks a day ( over 3- one hour naps). not that i am off of them i have 2- 20 mins naps a day. i am going to be put on ritalin here soon as well. i know what you mean by lead head. my body hurts so bad in the morning because i am so heavy feeling and stiff,. i have cried in the shower because it hurt to stand for that long. i get these attacks alot in the winter time. i can tell you that since takng vitamin D and potassium everyday, i havent had the heavyness as bad. i would check with your doctor to see if you are allowed to take vitamins with your meds.

i hope this helps!

[Heathrr]

I get the feeling moreso when I've been active the day before or if I'm sick. Especially when I'm sick and have trouble breathing during the day, I find that if I'm extremely tired for an extended period of time, the lead effect tends to happen. Its moreso feeling really weak. It's gotten a lot better since I started taking Modafinil (Provagil) but when I'm sick or had a rough week, it's pretty much like someone is pushing on my body not letting me get out of bed. The only thing I found that helps is proper sleep, good food, taking medication on time and trying to stay healthy. But we all have our days.

[Melanie]

Hi everyone, 

 

Thanks so much for all of your replies. Goodness, its been over a year since I've come back to this forum so I'm just reading most of them now. 

 

I've been doing a little better since my doctor prescribed Xyrem. The feelings of being unable to move have pretty much stopped since taking Xyrem. My antidepressants have also changed so I don't really know what to contribute it to. 

 

I'm still struggling overall with getting out of bed in the morning and I miss a ton of work. I'm frustrated overall with this condition and haven't seen much improvement in the past year which is why I'm coming back to narcolepsy network for guidance.

 

Thanks again everyone for your replies, it sucks that you're going through this but its nice to know I'm not alone. 

[drago]

Hello everyone! I'm new here so I apologize if this is a repeated topic. I tried skimming through the posts but didn't see much.

My situation is that 1-2 days a week I have a much harder time than usual getting out of bed. I was diagnosed with narcolepsy a couple weeks ago. I always have a hard time getting out of bed and getting to work on time but there is always a couple days that I can't get out of bed at all. Its a different feeling than normal exhaustion. When I wake up I feel like my entire body is made out of lead. I can move, but barely. If I get up my head is so heavy I have to lay back down. This feeling lasts all day. So I end up skipping work and sleeping the day away. I have to push so hard just to get up at 5:30pm when my boyfriend gets home. It almost reminds me of sleep paralysis but the difference is I can move, its just very hard, and it last at least 8 hours. I'm very lucky that I still have my job at this point but if it continues I can't imagine I will much longer.

I was wondering if anyone else has experienced this and if so is there anything that can be done? I have a few more weeks before I see my doctor again so I'll be sure to ask him when I see him but until then just wondering what your thoughts were.

 

 

Hello Melanie:

 

I used to have something like this feeling, except it would suddenly (and randomly) occur during the day. I would suddenly feel as if I had weights tied to all my appendages and my head was heavy, too. I was working in the theatre at the time, and I can assure you, suddenly feeling wiped-out, off-balance, AND heavy while on a 40 ft. ladder holding up a light fixture is NOT fun!

 

I did a neuro transmitter test with my doctor. They aren't considered accurate (there's not a great baseline for them yet, and the blood/brain barrier also causes an issue with it) but it did me a HUGE favor: it identified a major imbalance. Dietary.

 

As sleepy people -- and narcoleptics especially -- we're often pushed to keep alert, keep awake. I'm not complaining about this at all, but the fact is, our brains and bodies like balance an equalibrium. And if we push too hard against that, the brain / body may backfire.

 

In my particular case, there was an incredibly low GABA count. GABA is involved in sleeping (among other things) and is an inhibitory neurotransmitter. ALL of my excitatory neurotrasmitters (like nonepinephrine) were elevated, but my GABA was very, VERY low. This is bad because GABA is suppose to "GO" when excitatory neuortransmitters are out and about...! 

 

The reason my GABA was low was also revealed in the test: my Taurine levels were very low. I hadn't been eating many meat/fish/other products with taurine, and since Taurine is majorly necessary for GABA production, my GABA was incredibly low. Especially for someone taking amphetamines!

 

So even though GABA is an inhibitory neurotransmitter, low levels caused me to feel heavy, wiped-out, and, well, lackluster is the only real word for it. I had no pep, no energy, AND -- I had a hard time even sleeping... which makes sense, since GABA helps during sleep.

 

I took a Taurine suppliment (1000mg/day) and started to change my diet. Once my diet was up and running with better nutrients, I dropped to 500mg/day, then got rid of it all together.  The heaviness/lackluster/wiped out feeling went away. The first week it still happened, but it happened less frequently (and less severely) by the end of the week for me. All I had to do was make sure I was eating better -- in my particular case, fish and beef, which I had been too lazy to cook before...

 

I am an extremely active person (10-12 hr/week doing Karate, 2-5 hr/week of additional training) now, and I can't imagine going back to feeling like that. Working out definitely improved my energy level -- mostly because it helps me sleep through the night.

 

One other thing: When I was having a particularly hard time with energy/feeling wiped out, even after the Taurine thing, I did a Ketogenic Diet for a while. I switched to a medical food called Axona, which essentially puts your body in a state of ketosis without requiring a severe diet change... my doctor didn't recommend continuing with it for more than a few months, but it got me out of a tough rut in terms of feeling awake/functional.

 

I hope you feel better soon,

drago

[DeathRabbit]

There are some supplements with GABA in them as well, if you want to try those. I'm not sure at how effectively it can pass through the BBB, but another option is to grab a Red Bull. Those have a mega does of taurine.

[Melanie]

Thanks Drago and Death Rabbit!

 

I'll be honest with you, I don't know much about diet and what effect it has on narcolepsy. I try to research what I can but what I have tried as far as herbs and vitamins hasn't made any difference for me.

 

So correct me if I'm wrong but gaba and tourine help with day time fatigue? I haven't had tourine (to my knowledge) in over a year, I'm a vegetarian. I often wonder if lack of meat in my diet played a part but I've been struggling with day time fatigue long before I became a vegetarian.

 

I was recently at symposium about cats and they talked about their need for tourine and apparently it can be produced synthetically. Would you happen to know if the supplements are synthetic or made from animal products? 

 

This is very interesting, thanks so much for your replies. I'm going to research more about it.

 

~Melanie

[DeathRabbit]

I would guess that lack of taurine is not the source of your problems, but it can't be helping. As far as if there are any vegetable sources of it, I have no clue. If you allow yourself eggs, I am betting that would do the trick, but if you are hardcore about the vegan diet, you may want to look at supplementation. Andof course there's the red bull option still . I am convicned those things work though by taking energy away from the end of your life to give it to you now, haha j/k