Jump to content


Photo

New Here


  • Please log in to reply
10 replies to this topic

#1 oneplustwins

oneplustwins

    Member

  • Members
  • 12 posts
  • Gender:Female
  • Location:Ohio
  • Interests:Nursing, my family, playstation 3, bioshock, tattoos, reading

Posted 24 April 2013 - 03:09 PM

I've been putting off posting, mainly because I've been ignoring the problem but it's really getting out of control.  For the past couple years, I've suffered from EDS.  They chalked it up to depression, an infection, everything they could think of.  In October, my PCP finally said he suspected narcolepsy and sent me to a sleep specialist.  Anyway, I now have a sleep study scheduled for May 13.  I'm off work [I'm a pediatric home health nurse], and discouraged from driving because I keep falling asleep at the wheel.  I'm torn between what I want the results to be.  Part of my hopes they find narcolepsy so I can be treated and feel somewhat better.  Part of me doesn't want that label forever.  As of now, the first part is winning.  But what if it isn't narcolepsy?  Then I have to suffer?  I'm already miserable, and I feel like no one understands.  My husband just tells me to fight it and not fall asleep.  It's not that easy.  Even if I sleep 8 hours, I'm still sleepy the next day.  He keeps asking how I can be tired.  Half the time, though, I have to take something to help me sleep so I'm not waking up from nightmares.  I say nightmares, but they're worse than that.  They feel so...real, and I can't move at all.  I wake up in a panic.  I also have problems with depression and bipolar, along with a chronic bladder disease.  I'm losing my mind, slowly.  I hate feeling so worn down all the time, I'm only 28, I should NOT be feeling this way.  Anyone have any tips on how I can deal with this until the end of May?  My follow up appointment is May 29, so I probably won't know anything until then.  ):



#2 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,341 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 24 April 2013 - 03:20 PM

What meds are you on for bpd/depression? Some mood stabilizers and the like can screw with your fatigue levels. My roommate is bipolar and he took Depakote one time and started having passing out episodes.



#3 Mmartens3

Mmartens3

    Member

  • Members
  • 146 posts
  • Gender:Female

Posted 24 April 2013 - 03:49 PM

I am waiting on my sleep study as well. It is this weekend. A sleep specialist told me he thinks I have narcolepsy. My family members don't think so. They think I can just snap out of it if I put my mind to it. I have thought for a long time that there was something not normal about how I felt. It can't be right to be this tired. I have had all sorts of test done and have seen lots of specialists. My pcp thinks I am just stressed. I got a referral to a sleep specialist when I mentioned symptoms of possible sleep apnea. But the sleep doc said it was probably not sleep apnea but it is more likely narcolepsy. i am like you. I would like a diagnosis but it seems daunting to be faced with a chronic condition with no cure and only symptom management. And this condition seems to be so misunderstood. I have found that even though I do not have a diagnosis yet, I can relate to a lot of what is being discussed here. If it turns out I don't get dx with N, I don't think that will change that. There are quite a few people on here who are not diagnosed w N yet. Some were dx with Idiopathic Hypersomnia instead. I am not talking about this much to family and friends yet. I am waiting for an official diagnosis. So right now I am just working on having better sleep habits, diet and exercise. Not that I am very successful at those things. But when I am, it does help. Oh yeah and I am keeping a daily sleep journal. Did your sleep dr give one of those to fill out?

#4 oneplustwins

oneplustwins

    Member

  • Members
  • 12 posts
  • Gender:Female
  • Location:Ohio
  • Interests:Nursing, my family, playstation 3, bioshock, tattoos, reading

Posted 24 April 2013 - 07:02 PM

DeathRabbit:  I've been on Lexapro for years.  I just feel like if it were side effects, it would have gone away by now.  I was on Ritalin at one point, it helped for an hour or two and then I would crash.  But my sleep specialist said my concentration issue is probably because I am so tired all the time.

 

Mmartens:  That's pretty much how my husband is, thinks I can just try hard enough and it will get better.  And he didn't give me one, just set me up for a sleep study.  I honestly don't know what else to do.  I cut caffeine out of my diet totally, it did nothing.  So I brought it back in moderation [this girl loves her some dr pepper], and nothing has changed.  My husband even gave me a red bull one day--no effect whatsoever. 



#5 Mmartens3

Mmartens3

    Member

  • Members
  • 146 posts
  • Gender:Female

Posted 24 April 2013 - 08:10 PM

Oneplustwins, I am a Pepsi addict. I cant drink much though because it does affect how I sleep at night. Even just one can of Pepsi early in the day can cause me to have an anxiety attack at night that keeps me up for hours!

You mentioned in another post that your kids keep you going. That's how I feel too. I have 4 kids. Two big ones and two little ones. My baby girl has Down syndrome. She really needs me!

#6 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,341 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 24 April 2013 - 09:44 PM

DeathRabbit:  I've been on Lexapro for years.  I just feel like if it were side effects, it would have gone away by now.  I was on Ritalin at one point, it helped for an hour or two and then I would crash.  But my sleep specialist said my concentration issue is probably because I am so tired all the time.

 

Mmartens:  That's pretty much how my husband is, thinks I can just try hard enough and it will get better.  And he didn't give me one, just set me up for a sleep study.  I honestly don't know what else to do.  I cut caffeine out of my diet totally, it did nothing.  So I brought it back in moderation [this girl loves her some dr pepper], and nothing has changed.  My husband even gave me a red bull one day--no effect whatsoever. 

Well I actually have a horror story about SSRIs but Lexapro was actually the one I think that did me some good. Paxil, however, that crap was no bueno. And almost impossible to kick, despite all the marketing literature and my doctor telling me it was non-habit forming. Yeah, it's no-habit forming as long as you don't mind feeling nauseous, getting the spins, and feeling your brain is getting electroshocked for a few weeks. And it took more than a year for all the discontinuation effects to go away. But Lexapro, though I wasn't on it long, seemed like it was better. I didn't instantly start getting brain zaps if I missed a dose by a few hours. I still wonder if Paxil could have given me N. There's a number of documented cases with SSRI prolonged usage then discontinuation giving a semi-permanent REM rebound that acts exactly like N. And everyone agrees, Paxil is the worst offender it seems. in fact, GSK got fined for misrepresenting info about it and suppressing studies of negative side effects and discontinuation syndrome, as well as trying to market it to kids.



#7 oneplustwins

oneplustwins

    Member

  • Members
  • 12 posts
  • Gender:Female
  • Location:Ohio
  • Interests:Nursing, my family, playstation 3, bioshock, tattoos, reading

Posted 25 April 2013 - 04:52 PM

Mmartens: Yeah, that's why I tried cutting caffeine out totally [well, that and my bladder], but even if I don't have any, I still sleep like crap.  ):  I am to the point where my Lunesta isn't working, but my Seroquel seems to help a little.  It's the wrong dosage, it's an old as needed order, but it's just about the only thing that helps me get a semi-decent night's sleep anymore.  How old are your kids?!  I know how you feel, I personally don't have children with special needs, but as a peds nurse, I see a lot of what goes on.  I know it's nowhere near the same, but I hold a high regard for parents of children with special needs.  (:  Anyway, sorry for the ramble, haha!

 

DeathRabbit:  Lexapro seems to be the best for me, too.  I was recently put on Anafranil, and that seems to work.  My script ran out so I need more, but you know the medical profession--why rush?  I've never tried Paxil, I heard horror stories.  The only one I really had a reaction to, and it's not an SSRI, is Adderall.  Massive panic attack there.  It was terrifying.

 

I'm counting the days until this sleep study.  My husband told me today he wished he had narcolepsy.  That hurt.  I literally wanted to cry.  He thinks I'm kidding or something, it's impossible for him to understand I literally can NOT keep my eyes open at times.  ):  I wish there was some way to better explain it to him.  ):  Maybe after my sleep study they'll know some way to make me feel better.  ):



#8 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,341 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 25 April 2013 - 05:16 PM

My Dad is still convinced it's just a mental issue that's somehow causing the narcolepsy. And I mean it does compund things to have depression as well, but I keep telling him, there's something more at play. I've always hated myself. It never made me sick before, why now? But yea, it sucks when people you trust betray you with their snide little remarks or just don't take you seriously.

 

EDIT: Anafranil is actually what my Mom takes and she's swears by it. It's an old tricyclic, and you don't really see them that much anymore because the general consensus is that the side effects are worse. I think that's crap though; the SSRI side effects are just more sneaky. Ultimately, I think all antidepressants are poorly marketed. I think anything you take for a long period of time will rewire your brain for the worse. I think SSRIs and the like would be best if used for maybe a maximum of a year and then titrated down, just to get you over a rough hump.



#9 Mmartens3

Mmartens3

    Member

  • Members
  • 146 posts
  • Gender:Female

Posted 25 April 2013 - 05:44 PM

Oneplustwins, my kids are 15, 12, 3, and 20 months. It hasn't been easy dealing with a baby with special needs. I feel like I haven't gotten a decent nights sleep since before she was born. I mean I have had EDS since my teens but it seems like it has gotten 100 times worse since my baby girl was born.

 

Caffeine helps me have a little more energy during the day sometimes but it mostly affects me at night. It seems like it keeps me up at night more than it helps me during the day. And then my EDS is worse the next day because I was up late into the night. It is just not worth it to use as a stimulant during the day.

 

I am a little wary about having to take strong drugs if I am dx with N. Not to long ago I was prescribed some strong pain meds for my headaches. I tried a bunch of different kinds and didn't like any of the side effects so I havent been taking any. Chiropractic and stretching has helped so I only need to take tylenol now. Anyway, I am just waiting on my sleep study and then I will explore treatment options more thouroughly.



#10 doctahjay

doctahjay

    Member

  • Members
  • 10 posts

Posted 30 April 2013 - 11:44 PM

I'm off work [I'm a pediatric home health nurse], and discouraged from driving because I keep falling asleep at the wheel.  I'm torn between what I want the results to be.  Part of my hopes they find narcolepsy so I can be treated and feel somewhat better.  Part of me doesn't want that label forever.  

 

Hi! I would definitely recommend the sleep study. I felt the same way about the "label." But, I tell you what... once I found a good combo of meds that worked, it was life changing. I knew I had N+C for 6 years before finally buckling down and seeing somebody, who actually cared. I went to 3 physicians before one would actually listen to me. The first two said I was just a "tired med student with anemia". You're in the healthcare field, you know what a good doc is like. Find one and stick with him/her. Also, the meds can absolutely be exacerbating your fatigue, so I would inquire about that too. 

 

Anyone have any tips on how I can deal with this until the end of May?  My follow up appointment is May 29, so I probably won't know anything until then.  ):

 

Besides the caffeine addiction I had developed... two things that helped me out a lot were making commitments and psyching myself up. If I made a commitment, if forced me to get my act together and be productive (which yes, I understand is extremely hard at times). Then, I made conscious effort to literally psych myself up. Constantly singing a song in my head, dancing around a bit... just staying as mentally active and alert as I could... the more active I try to keep my brain, the easier it is to battle the EDS.

 

Good luck!!!! :)



#11 doctahjay

doctahjay

    Member

  • Members
  • 10 posts

Posted 30 April 2013 - 11:44 PM

Whoops! I epically failed at quoting in my reply. Sorry!