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I Am New....and Glad I Have Narcolepsy Because I Thought I Was Crazy


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#1 dawniebaby68

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Posted 09 November 2010 - 09:51 AM

Wow I am so glad for this site, I need to find some people that I can relate to. I am 42 and was just finally diagnosed with Narcolepsy after years of them saying I was just lazy, depressed, I did have anemia- so that was an excuse for a while, and the list goes on...finally one of my pcp said I want you to have a sleep study I think you have sleep apnea...that is how the process started for me over a year and a half ago. I am currently on FMLA and applied for disability. Its so bad, I have three young children and I cant stay awake, I am always dragging from the sleep depravation so I am cranky, to say the least, nothing gets done, until I am having a good day and I am lucid enough to get to the store to buy them food, or go get my meds. I have like three calandars around the house. I have been on provigil for about two yrs now, which works some of the time in small bursts, I cant take more that two because my insurance wont cover it, and Xyrem but still the same. So frustrated...thanks...

#2 Geohff

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Posted 09 November 2010 - 04:53 PM

Welcome! I hope you find the support and info you need here like I did. The best thing you’ve begun now to look in the right place and you will find here others going thru or have gone thru what you are and that’s comforting.

Again welcome!



#3 Irishhh

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Posted 23 November 2010 - 04:33 PM

My heart is heavy for you. I am 24 so I've been diagnosed young. I can't imagine what it must have been like for you all these years. Do you think you've had N (narcolepsy) for your entire life?? I think I have.

So it seems you've had your diagnosis for a while now, and you're still having trouble coping with it. I can't say that it will get easier for you, it may or may not. Some people are better equipped to deal with their illness and the symptoms. It's not that they are stronger or that you are weak, or even that your symptoms or better or worse than theirs are. The thing about N is that everyone experiences it differently, yet it's so similar for us all.

Really though, I am so saddened when I hear of another PWN (person w/ N) feeling so down. We all know what it's like because there are good days and bad days, but for most of us, it's mostly bad days. We aren't negative people, we aren't lazy, we aren't losers and abusers... We are lost in a world unknown to most. Everyone is confused in dream land, and that's basically where we all live.

I can't offer advice on children b/c I have none. You said you have three. How old are they? Male or female? I am heartbroken b/c I don't think I should have children w/ my illness the way it is. I honestly don't know where PWN's w/ kids get their strength.... but I wish I could find it. I'd like to have a family some day.

Your exp w/ provigil sounds similar to mine of nuvigil. Were you saying you are on Xyrem? I know it might be difficult for you, but what I do w/ the Nuvigil is take days off sometimes. Every week or two I take two days off of the pills. It's somewhat like I get a refresh. I've never experienced a recharge like the way I was when I first got the medicine... but it does make it work a little better. Also, diet and exercise.. I know, yeah right, exercise. But even if all you can do is get a bit of stretching in, it helps. It at least makes your muscles and bones feel a bit better.

It's a hard road you're on, but there are plenty of us right there with you.

#4 Irishhh

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Posted 23 November 2010 - 04:36 PM

Oh, wait, were you saying you started the process of diagnosis a year or so ago? or did you mean that you were diagnosed back then? I'm sorry, I got confused lol Welcome to Narcolepsy! It's usually like this :)

P.S. think of being grumpy like your children. How do kids act when they are sleepy and in need of a nap? The same way we do when we are! So try your best to have patience with them :)

#5 OPgirl

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Posted 27 November 2010 - 10:01 PM

Wow I am so glad for this site, I need to find some people that I can relate to. I am 42 and was just finally diagnosed with Narcolepsy after years of them saying I was just lazy, depressed, I did have anemia- so that was an excuse for a while, and the list goes on...finally one of my pcp said I want you to have a sleep study I think you have sleep apnea...that is how the process started for me over a year and a half ago. I am currently on FMLA and applied for disability. Its so bad, I have three young children and I cant stay awake, I am always dragging from the sleep depravation so I am cranky, to say the least, nothing gets done, until I am having a good day and I am lucid enough to get to the store to buy them food, or go get my meds. I have like three calandars around the house. I have been on provigil for about two yrs now, which works some of the time in small bursts, I cant take more that two because my insurance wont cover it, and Xyrem but still the same. So frustrated...thanks...



#6 OPgirl

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Posted 27 November 2010 - 10:39 PM

Wow....I almost thought I was reading about myself. I am 44 with 3 kids and was diagnosed with narcolepsy about 6 years ago. I did do the provigil for probably a year and it worked somewhat but nothing great. It kept me awake while driving and that was the important thing. I tried the xyrem also but I hated to be in such a deep sleep in case my baby needed me. What has really saved me was when I switched to concerta. It was like a miracle pill for me. Not only did I stay awake but I was also productive. I do have to say though that after a few years it doesn't work as well as it once did. I heard there is a new medication out there that I am willing to try. Good luck to you. I know how difficult it is. I remember how I used to try to sneak away into a closet or somewhere to sleep even if it was just for 5 minutes. I hope it will get better for you.

#7 SleepingPhoenix

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Posted 28 December 2010 - 02:17 PM

I am new to this too. I also thought I was crazy since I was having hypnogogic hallucinations and I related the cataplexy and sleep paralysis with depresion, instead of something bigger. I remember going first to my psychiatrist and asking her to hospitalize me, since I waws loosing my mind. When I told her what was going on she even got the ipod out and showed me the sympthoms of narcolepsy. It took me months to accept this, but in a way now Im relieved cause this validate years of frustration, weakness, falling asleep everywhere, and disipates what everyone was telling me that it was mental and nothing more.

With the kids, they are highly adaptable, your can teach them how to deal with you and your illness and most of all make clear that they are important to you and matter if it doesn't seem to. I know it's hard as a parent, in my case and an auntie, who used to be always for them, and now I can barely be there. If you involve them and ask them to help you in the llittle things, is enough for them to appreciate you as a parent and look up to you, like any kids would do.



#8 Military Mom

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Posted 01 February 2011 - 12:21 AM

Hi I am new as well. I just found this site a few days ago and have been reading when possible. I can't read for very long so I have a lot of information to get through. I am 50 years old and got my diagnosis about 6 weeks ago I believe. I can't figure out how this all came about. Until a year ago I NEVER slept during the day. Now I might sleep for 3 days with very short periods of wakefulness. I don't understand what I have been diagnosed with yet. I have tried a few meds but nothing has worked yet. I just started Provigil but I haven't seen any difference. Would I have seen an improvement in a day or two? Is it "normal" to be emotionally confused? I get such intense anger so easily one minute and fight back tears the next. I feel like I'm crazy. I have always been the strength of the family, the rock. I AM the one who does (did) everything for everyone and still went to the gym 4 days a week. Now I can't wait to get home in the afternoon just to be able to sit and close my burning eyes for a while. I don't think my family understands that I CAN'T do the things like I used to. I don't have the energy. I am still asked to drive the 3 hours to the airport to pick up a relative or whatever. I can't seem to get them to understand that I am afraid to drive that far. It seems they don't WANT to know. That would mean Mom isn't super human. I have gained 45lbs in 8 months. Is that something that happens to people with Narcolepsy? I can't remember things and I can't concentrate or focus. Being an old woman, it scares me to death because my mother had Dementia. I'm sorry for rambling and not making sense. It all just came tumbling out.

#9 chasing_sleep

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Posted 15 April 2011 - 02:09 PM

I think the emotional thing is common. well i know i feel the same way quite frequently. i got diagnosed a few years back I was really glad to get an answer but it didn't make certain things easier. At least I know why I struggle with school so much! When I got diagnosed they first put me on Provigil and it worked great for awhile but then i noticed it basically stopped. Then they tried ritalin which was awful, i would cry at odd things. so then it was onto adderrall xr which was great for great while. i didn't get changed to dextroamphetamine until last year. the whole while we had been trying various things for sleep. i finally got on xyrem last week. i feel like my short term memory is no good but i think that could be either years of poor sleep/not even sleep and/or sleep meds. i was 26 when i was diagnosed. for those of you that get the diagnosis later on in life my heart out to you, that you were able to do so much for so long. I do mean that with so much respect. i think you will get to a point were you realize you need to do whats best for you if that means saying i can't pick so and so from the airport up because i am too tired. i don't have children and do to my health issues probably won't so not sure what to say there. but i can tell you just educate your friends and family. people that love you and care about you will understand. one of the hardest parts about the illness is learning to lean on others especially if you are used to being indepedent.

#10 narcatfl

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Posted 26 August 2011 - 11:47 PM

Hi all, I'm new here too. I feel better knowing there are people who understand and I'm not all alone in this N/C world. I was just diagnosed here in my late 30's after a lifetime with it. It was a lot of misdiagnoses of depression.

In high school my teacher thought I was on drugs because I slept and sometimes slurred my speech. I am so slow like a turtle now, or at least I'm aware of it now thanks to Xyrem. Xyrem gets me that deep sleep so I can be awake enough to realize how tired I actually am. But I can now watch a whole movie and know what it's about!

I'm in need of some face to face understanding and going to try and start a support group here in FL! I can only stand to be on the computer so much.

#11 itsmeinin

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Posted 26 August 2013 - 12:07 PM

I totally understand that feeling of being alone or feeling crazy. That is almost as bad as the tiredness. I am 45 and had my kids when I was younger (youngest 15 now), but looking back I don't know how I did it. I was so tired. I remember just trying to do what I thought was normal so when my oldest was a baby I thought I'd go to the mall. I remember sitting down on a bench in the middle of the food court that evening, holding him in my arms and thinking, " I don't even know if I can keep holding him safely, let alone drive home". I still can't believe it took till age 44 for me to figure out my diagnosis. I'd complained of tiredness to many health care providers, but was never really taken seriously. I finally diagnosed myself, then made an appointment with a neurologist who confirmed it.



#12 Lorz

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Posted 28 August 2013 - 05:47 AM

I am new to this too. I also thought I was crazy since I was having hypnogogic hallucinations and I related the cataplexy and sleep paralysis with depresion, instead of something bigger. I remember going first to my psychiatrist and asking her to hospitalize me, since I waws loosing my mind. When I told her what was going on she even got the ipod out and showed me the sympthoms of narcolepsy. It took me months to accept this, but in a way now Im relieved cause this validate years of frustration, weakness, falling asleep everywhere, and disipates what everyone was telling me that it was mental and nothing more.

With the kids, they are highly adaptable, your can teach them how to deal with you and your illness and most of all make clear that they are important to you and matter if it doesn't seem to. I know it's hard as a parent, in my case and an auntie, who used to be always for them, and now I can barely be there. If you involve them and ask them to help you in the llittle things, is enough for them to appreciate you as a parent and look up to you, like any kids would do.

Well said.  I have already been diagnosed witn N/C yet, I am feeling that..."Am I going crazy?" feeling again.  Things are getting worse - keep refusing to throw in the towel but my only family (dad) thinks its my time to listen to my body.... I love your advice about kids; it sounds like it will help both the children and parent - the kids might feel a sense of accomplishment if they see how they can help and get reminders of how they are appreciative.  (I don't have kids.  Don't think I can but wish to.)

 

Hi I am new as well. I just found this site a few days ago and have been reading when possible. I can't read for very long so I have a lot of information to get through. I am 50 years old and got my diagnosis about 6 weeks ago I believe. I can't figure out how this all came about. Until a year ago I NEVER slept during the day. Now I might sleep for 3 days with very short periods of wakefulness. I don't understand what I have been diagnosed with yet. I have tried a few meds but nothing has worked yet. I just started Provigil but I haven't seen any difference. Would I have seen an improvement in a day or two? Is it "normal" to be emotionally confused? I get such intense anger so easily one minute and fight back tears the next. I feel like I'm crazy. I have always been the strength of the family, the rock. I AM the one who does (did) everything for everyone and still went to the gym 4 days a week. Now I can't wait to get home in the afternoon just to be able to sit and close my burning eyes for a while. I don't think my family understands that I CAN'T do the things like I used to. I don't have the energy. I am still asked to drive the 3 hours to the airport to pick up a relative or whatever. I can't seem to get them to understand that I am afraid to drive that far. It seems they don't WANT to know. That would mean Mom isn't super human. I have gained 45lbs in 8 months. Is that something that happens to people with Narcolepsy? I can't remember things and I can't concentrate or focus. Being an old woman, it scares me to death because my mother had Dementia. I'm sorry for rambling and not making sense. It all just came tumbling out.

I tried Provigil too with no luck.  Is that what is causing emotional confusion or anger?  If so, I think call your doc asap.  Provigil (correct me if I am not remembering this right) should work immediately and not take time to build up to work.  Before being treated for my N/C, I was ~35-40 lbs heavier. 

I wanted to write more but I'm in and out a sleepy haze.



#13 19leather63

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Posted 23 September 2013 - 09:54 PM

I am new to this forum. I was diagnosed in 2006 with OSA and having no insurance at the time my doctor diagnosed me at home using my Dad's old C-Pap machine. The short of it, I had a formal sleep study done in April 2013 after I got my Medicaid and found out how severe my apnea really is. I was diagnosed with severe Obstructive Sleep Apnea/Hypopnea Syndrome to the point that I stop breathing every 67 seconds and my new c-pap is now set up to 20. I thought this would fix the whole always being sleepy problem, but, it didn't so I had a daytime sleep study done in August 2013 only to find out I was going into the REM sleep cycle within 1 minute 25 seconds, I also have severe Narcolepsy. Basically I am 50 years old, have suffered from constant sleepiness and falling asleep for years and was finally diagnosed in four months time with 3 sleep disorders. People would talk to me and I wouldn't remember what they had said or if I had actually had a conversation with them or not, I seriously thought I was going insane. I saw the Pulmonologist's NP almost 2 weeks ago and she prescribed Nuvigil 150mg, the first 2 days were great, I thought I had finally gotten my life back... then on day 3 it started making my heart pound and my blood pressure drop, by day 5 I was just going in cycles, 3-4 hours for it to start working, a 2 hour alert period then back downhill again and it was taking my blood pressure with it. I am now off Nuvigil after 3 and 1/2 days of constant sleep working it back out of my system and not knowing which end was up. I also have NASH related Cirrhosis and my liver doesn't detox very well so it takes days for me to bounce back. I have probably gained 75lbs and couldn't figure out why, and the depression is unreal. They just wrote me a new prescription for Ritalin 20mg so I am really praying hard that this pill will work, I would love to have my life back again, it would be so nice being able to make it through a day with no brain fog and to be able to remember what I walked into a room to do.