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#1 cloudtalk

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Posted 01 December 2012 - 03:17 PM

A couple of things:

-Is anyone else getting way more depressed the further into winter we get? I feel useless and hopeless. This thought that I haven't had in a long time has crept back into my mind, "I hate myself and I want to die".

-Has anyone else not been able to get up to 4.5 on xyrem, for any reason? I seem to be stuck at 3g (x2), after having had to stop and restart the medicine. Any more and I get terribly anxious the next day and I'm afraid of and distressed by everything. I feel like a freak. I'm awake, but I want nothing more than to curl up in a ball and be unconscious until I can feel okay again.

Oh, and another thing:

-Does anyone else feel like their brain has atrophied or something, since they were younger? I'm 25, and since I was 18, and diagnosed with depression, I felt like my brain was atrophying. My psychiatrist said that wasn't possible, but I still feel that way. I was "smart" in grade school, but since then, with no one to force me to go to class and study despite feeling terrible, I haven't had the energy to keep up with schoolwork for the most part, I feel like my long term and short term memories are terrible, and my brain just doesn't function very well in general. I have trouble speaking because I lose my train of thought so quickly. And since it takes me forever to make decisions, I often end up making bad ones.

Here's a bit of my story:

When I was first diagnosed and given medication, in August, it seemed like such a relief. The Xyrem seemed so amazing at first. I woke up refreshed and happy after 8 hours of sleep. I was really excited about it. I felt like my life was going to get so much better and easier. I felt like I could finally be myself and be in control. But that didn't seem to be happening, except for the first few hours of the day. After being awake for about 6-8 hours, I felt like my mental state started to deteriorate. I'd be scattered, forgetful, and extremely anxious. I was so hopeful about getting better I kind of brushed this off for a while. If I took a nap, I'd feel a bit better, but still kind of off for the rest of the day.

When I got up to 4g, it was like a switch was flipped or something. I woke up very depressed, awake, but not wanting to do anything at all. I could not feel any positive emotions all day, everything seemed so horrible, and there was nothing I could do about it. I went back down to 3.75, but I realized how bad the anxiety had already become for me. My job had always been pretty easy for me, and now it seemed incredibly stressful. I was panicking and freaking out about everything. I literally felt like the world was ending. I hadn't noticed how irrational I had become.

I finally mentioned the anxiety to my doctor, and he had me stop taking Xyrem for a few days, to make sure that that what was causing the anxiety. I felt like crap those next few days, unable to stay asleep or awake, but the anxiety did subside. I started taking Xyrem again at 2.75g. I still felt pretty tired during the day at this dose, but not so anxious. More depressed, now, that I still felt like such a mess, that my life hadn't gotten much easier or better. Maybe it has, but it's hard to have perspective because my memory is so bad. I can't really remember how I felt before I started taking Xyrem. I think I had kind of decided that I just had to do my best to happy despite my limitations, despite being constantly tired. That might have been easier to do because it was summer.
I think winter is at least part of why I'm so depressed and hopeless feeling now.

Anyway, I raised my dose very slowly the second time around, and tried to get back up to 3.25, but this time the anxiety resurfaced at that dose, and I've only been able to handle 3g. I don't have as much daytime sleepiness, but now I feel discouraged, depressed, and afraid to do things. I don't want to get out of bed when I wake up. I don't want to take a shower. I don't want to face the world. I guess I'm depressed, again. I thought that would get better, now that I knew I had narcolepsy and could do something about that. I still take my Prozac. When I felt okay, it seemed so clear, that it was okay, and that I knew how to feel okay. Now I want so badly to feel okay again, but I feel helpless. I feel like I have no more friends, because how could anyone like me, while I'm like this.

I'm sorry for just kind of rambling about myself, I know I'm being irrational and self-indulgent, and I feel like a jerk, but I'm posting this anyway. I don't really know why, maybe I'm just hoping for something. I don't know, maybe that I'm not alone, or something that will help me snap out of it, or someone to tell me if I'm right or wrong. Some of you seem so resilient and positive, and I wish I could be more like you. I feel weak and afraid of everything. I'm going to start seeing a therapist next week, so maybe she'll help me turn things around. Anyway, not sure how coherent this is, but posting anyway.

#2 Asleeper

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Posted 03 December 2012 - 01:00 AM

Sorry I don't have any great advice for you . I just want you to remember that you are not alone in this. We will all try to keep good thoughts for you.
Personaly, I have always found that anxiety about anxiety is usually worse than anything real life can ever throw at you.

#3 SleepyRaffie

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Posted 03 December 2012 - 01:14 PM

Hi,

I have been really up and down since my diagnosis. I started seeing a therapist as well to help me process all of it. I think it is a great thing that you are being proactive about that.

I do not take the full dose of Xyrem as it makes me drowsy the next day. The Xyrem helps, but I still am working on getting a stimulant that works for me.

Yes, I feel like my brain is a slug compared to the past.

I know someone who uses a full spectrum light in the winter months and it helps them. Have you ever tried this?

I know it can feel really lonely. You are definitely not alone.

#4 Lauraviv

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Posted 03 December 2012 - 10:14 PM

A couple of things:

-Is anyone else getting way more depressed the further into winter we get? I feel useless and hopeless. This thought that I haven't had in a long time has crept back into my mind, "I hate myself and I want to die".

-Has anyone else not been able to get up to 4.5 on xyrem, for any reason? I seem to be stuck at 3g (x2), after having had to stop and restart the medicine. Any more and I get terribly anxious the next day and I'm afraid of and distressed by everything. I feel like a freak. I'm awake, but I want nothing more than to curl up in a ball and be unconscious until I can feel okay again.

Oh, and another thing:

-Does anyone else feel like their brain has atrophied or something, since they were younger? I'm 25, and since I was 18, and diagnosed with depression, I felt like my brain was atrophying. My psychiatrist said that wasn't possible, but I still feel that way. I was "smart" in grade school, but since then, with no one to force me to go to class and study despite feeling terrible, I haven't had the energy to keep up with schoolwork for the most part, I feel like my long term and short term memories are terrible, and my brain just doesn't function very well in general. I have trouble speaking because I lose my train of thought so quickly. And since it takes me forever to make decisions, I often end up making bad ones.

Here's a bit of my story:

When I was first diagnosed and given medication, in August, it seemed like such a relief. The Xyrem seemed so amazing at first. I woke up refreshed and happy after 8 hours of sleep. I was really excited about it. I felt like my life was going to get so much better and easier. I felt like I could finally be myself and be in control. But that didn't seem to be happening, except for the first few hours of the day. After being awake for about 6-8 hours, I felt like my mental state started to deteriorate. I'd be scattered, forgetful, and extremely anxious. I was so hopeful about getting better I kind of brushed this off for a while. If I took a nap, I'd feel a bit better, but still kind of off for the rest of the day.

When I got up to 4g, it was like a switch was flipped or something. I woke up very depressed, awake, but not wanting to do anything at all. I could not feel any positive emotions all day, everything seemed so horrible, and there was nothing I could do about it. I went back down to 3.75, but I realized how bad the anxiety had already become for me. My job had always been pretty easy for me, and now it seemed incredibly stressful. I was panicking and freaking out about everything. I literally felt like the world was ending. I hadn't noticed how irrational I had become.

I finally mentioned the anxiety to my doctor, and he had me stop taking Xyrem for a few days, to make sure that that what was causing the anxiety. I felt like crap those next few days, unable to stay asleep or awake, but the anxiety did subside. I started taking Xyrem again at 2.75g. I still felt pretty tired during the day at this dose, but not so anxious. More depressed, now, that I still felt like such a mess, that my life hadn't gotten much easier or better. Maybe it has, but it's hard to have perspective because my memory is so bad. I can't really remember how I felt before I started taking Xyrem. I think I had kind of decided that I just had to do my best to happy despite my limitations, despite being constantly tired. That might have been easier to do because it was summer.
I think winter is at least part of why I'm so depressed and hopeless feeling now.

Anyway, I raised my dose very slowly the second time around, and tried to get back up to 3.25, but this time the anxiety resurfaced at that dose, and I've only been able to handle 3g. I don't have as much daytime sleepiness, but now I feel discouraged, depressed, and afraid to do things. I don't want to get out of bed when I wake up. I don't want to take a shower. I don't want to face the world. I guess I'm depressed, again. I thought that would get better, now that I knew I had narcolepsy and could do something about that. I still take my Prozac. When I felt okay, it seemed so clear, that it was okay, and that I knew how to feel okay. Now I want so badly to feel okay again, but I feel helpless. I feel like I have no more friends, because how could anyone like me, while I'm like this.

I'm sorry for just kind of rambling about myself, I know I'm being irrational and self-indulgent, and I feel like a jerk, but I'm posting this anyway. I don't really know why, maybe I'm just hoping for something. I don't know, maybe that I'm not alone, or something that will help me snap out of it, or someone to tell me if I'm right or wrong. Some of you seem so resilient and positive, and I wish I could be more like you. I feel weak and afraid of everything. I'm going to start seeing a therapist next week, so maybe she'll help me turn things around. Anyway, not sure how coherent this is, but posting anyway.


I'm sorry you have to go through this, but it has been similar for me too. I started Zyrem over 2 months ago and still at 2.75 myself. I also can only tolerate low doses of Nuvigil (25-50mg). Depression and anxiety compound things leaving me feeling isolated and lonely. EDS is my primary symptom but also get HH and mild cataplexy. RLS, Fibro, and gastroparesis along for the ride too. I'm just starting to get into various online forums, and it helps knowing I'm really not alone. God Bless.

#5 DevonKay

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Posted 03 December 2012 - 10:36 PM

A couple of things:

-Is anyone else getting way more depressed the further into winter we get? I feel useless and hopeless. This thought that I haven't had in a long time has crept back into my mind, "I hate myself and I want to die".

-Has anyone else not been able to get up to 4.5 on xyrem, for any reason? I seem to be stuck at 3g (x2), after having had to stop and restart the medicine. Any more and I get terribly anxious the next day and I'm afraid of and distressed by everything. I feel like a freak. I'm awake, but I want nothing more than to curl up in a ball and be unconscious until I can feel okay again.

Oh, and another thing:

-Does anyone else feel like their brain has atrophied or something, since they were younger? I'm 25, and since I was 18, and diagnosed with depression, I felt like my brain was atrophying. My psychiatrist said that wasn't possible, but I still feel that way. I was "smart" in grade school, but since then, with no one to force me to go to class and study despite feeling terrible, I haven't had the energy to keep up with schoolwork for the most part, I feel like my long term and short term memories are terrible, and my brain just doesn't function very well in general. I have trouble speaking because I lose my train of thought so quickly. And since it takes me forever to make decisions, I often end up making bad ones.



This really hits home. I'm 24, and I was diagnosed about a month ago. It was a very strange thing for me. I actually went to the doctor because I woke up with a migraine one day that just never went away. After ignoring it (foolishly) for three months, I went to the doctor. There were other issues I was concerned about, too: Inability to focus or concentrate, memory lapses, confusion, constant exhaustion. I thought they were all related to the migraine, so I was shocked when my doctor suggested narcolepsy. And it turned out that these things I thought were normal weren't at all. I thought everyone had automatic behaviors and time lapses all the time. I thought it was normal that certain parts of my body started to feel weak when I became emotional. And I didn't ever notice how tired I really was until I actually talked to a doctor about it. Anyway...my point... I was shocked. I thought everything was going to go away with the migraines, but it turns out my narcolepsy symptoms were coming to head. I suddenly had a condition that would affect every aspect of my life for the rest of my life.

I've been really depressed since then. I've always had issues with depression, but suddenly I just feel useless and nothing compared to my former self. And this brings me to your point about "brain atrophy." I've always felt myself to be a rather intelligent person. I graduated from college a couple years ago with highest honors and then got accepted into a prestigious graduate program. I was always successful in the professional setting, too. But these symptoms which seemed to get so bad so quickly have left me feeling like I'm in a decline. I feel stupid. I don't feel like me anymore, and I can't live up to my expectations. I'm struggling in school and work. I know it's the symptoms (memory lapses, concentration issues, EDS), but it's hard to accept it.

I'm still looking for a treatment that works for me. For now, I'm taking 150 mg Nuvigil. It hasn't helped my EDS at all, but I have noticed more headaches. Until I started the Nuvigil, I had the migraines under control with topamax. That hasn't even helped.

I'm sorry if I was rambling, got off topic, or if this was just useless. I forget my direction sometimes.

#6 cloudtalk

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Posted 04 December 2012 - 02:52 PM

I just want to say thanks to all of you who replied. It made me feel better just to hear I'm not alone. I should know that, but I guess my mind stops making sense when I'm overwhelmed. And the whole narcolepsy thing and the uncertainty and lack of control I feel tend to overwhelm me, and then I start to think I can't handle this. It also made me feel better to talk about how I was feeling and get some kind of response. When I try to talk to people in my life about it, they never understand, or have anything to say. I guess I want my feelings to be validated? And I always feel like I could use more advice. I hear it pretty often, but I also forget it pretty often. Like the being anxious about being anxious thing. Though, if it seems to anyone that I'm being whiny, and I need to suck it up and take more responsibility, or something, I would want to hear about that too. Because I don't want to be a jerk, and I don't even know. Anyway, just wanted to say thanks, really. You guys are great, and hopefully we'll all be okay.

#7 munky

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Posted 05 December 2012 - 12:41 AM

I don't think you're being whiny. I think it helps all of us to read what other people are going through and how other people feel, whether bad or good, because it lets us know we aren't alone. At least, I know that's true for me.

I've only recently been diagnosed, and I've been lucky to find a medication that seems to be working right away, as well as having a great support system. I think, at the moment, that it also helps that I've always been a very strong-willed person. When faced with a situation that causes me anxiety--or fear--I will almost always bull my way through it, because I won't let anything control me. The few exceptions to that are situations that, to me, just aren't worth the trouble. Usually, they're social situations. I don't, in general, like being around people I don't know, especially in large groups. So, unless there's some payoff I consider worth it, I don't do it. For example, going to the mall: not worth it. I'm not that interested in shopping, and I'm even less interested in the crowds. But when I decided a couple of summers ago that I wanted to play rugby, I made myself show up at the pitch, by myself, amidst a crowd of people I didn't know. It was worth it--playing rugby was a blast, although I seriously sucked at it. My depth perception just isn't good enough to actually catch a ball--or throw it where I need it to go. I was damn good at tackling people, though!

However, reading what everyone else is going through, I can see that I can't treat narcolepsy that way. It is going to be in control of my life. I'll have to adjust to it the same way I have adjusted to face-blindness, because it isn't going to go away. It isn't going to get better. It can be controlled through medication, but not by me, and much as I despise having to take medication every day I'm going to have to do it to have any semblance of a "normal" life. I hate that, but if I don't accept it, if I try to fight it, it'll break me.

I hate not having control over my own body--that's why I don't drink much. I hate the memory loss. I hate the exhaustion. I hate the confusion, and the depression and everything else. But if I don't acknowledge them as something beyond my personal control, it will only hurt me more. And reading other people's posts about how much they hate the same things helps. It helps me to understand that, in this case, no matter what I want, I am not in control. I can't make it stop. I have to learn, instead, to adjust and accomodate. And, as I've said, it helps to know I'm not alone.

I think I'm rambling--I'm good at that! I'll stop.

--munky

#8 Asleeper

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Posted 05 December 2012 - 12:42 AM

I think I need to make a comment here to the narcoleptics out there who feel stupid. I know a lot about this. I see comments from PWNs who are feeling like their brains are atrophying since developing narcolepsy. To look at it from the viewpoint of someone like myself, who has had narcolepsy from early childhood, I really have no before to compare myself to.
When I was a child and behind in school my parents had me tested and I was found to be intelligent . Just a few percentage points from genus! I do not think there has been any decline in my mental abilities since then. What I do know is that there are times that my brain is working better and then there are times I'm in the fog. If I have to do some serious thinking, planning or decision making it is best to wait until I'm alert. When I'm in a fog it is best to just smile and enjoy life.
My experancce in the working world has been good. On several jobs I can remember being told by my supervisors that I was not catching on to the job like the others. Then in a few months they shut up when thy see that I can do the job better half asleep than the others can awake. In a year they give me my own keys and in two I'm put in charge of the department.
We narcoleptics are not dumb, we just have to make the best use of our awake times to make our best efforts. On the off days, relax and try not to be too hard on yourself.

#9 Megssosleepy

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Posted 05 December 2012 - 03:39 PM

Ssleeper, I really like you last comment... Thank you for that.

I wanted to say that being a N is a roller-coaster of emotions. I had always considered myself to be a depressed anxious person since I was about 15 years of age. When I got my Dx and finally got to the point where Xyrem was helping me sleep I saw through the depression... I thought I was cured. Thought the world was a better place was happy and motivated...

I wish I could say it lasted... The past couple of weeks have been tricky feeling it all coming back. I think that sometimes we just have bad weeks/months. I remain hopeful that its just the dark days and the change of season that has brought me down. Ive had to up my stimulates again and was feeling bad about that... but I just reminded myself after reading through this post that if I need to take more its not me being weak and its not my fault.

I hate feeling sad and blue... I have some exciting things going on in my life right now that I really want to enjoy, instead I cant get past this yuck feeling

You are not alone! Reading your post reminded me that I am not either, thank you for posting your feelings... Even if I have to wait for spring to feel better... I know I will feel better and that important!

#10 munky

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Posted 06 December 2012 - 02:17 AM

I keep finding myself wanting to click 'Like' on posts.

Asleeper, Megssosleepy, thank you so much for your posts!

Asleeper, reading your post was like feeling a light bulb go on over my head. I'm considering printing it out and carrying it around in my purse, to remind myself of what you said whenever I have those bad days.

And Megssosleepy, your comment about upping your meds not meaning you're weak and it not being your fault ... same thing. I was very disappointed when the lower dose of Nuvigil didn't work, and I hate having to take meds every day just to feel awake. But I just keep having to remind myself that it doesn't mean I'm weak, and it is not my fault.

Thank you both!

#11 Megssosleepy

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Posted 06 December 2012 - 01:08 PM

I keep finding myself wanting to click 'Like' on posts.

Asleeper, Megssosleepy, thank you so much for your posts!

Asleeper, reading your post was like feeling a light bulb go on over my head. I'm considering printing it out and carrying it around in my purse, to remind myself of what you said whenever I have those bad days.

And Megssosleepy, your comment about upping your meds not meaning you're weak and it not being your fault ... same thing. I was very disappointed when the lower dose of Nuvigil didn't work, and I hate having to take meds every day just to feel awake. But I just keep having to remind myself that it doesn't mean I'm weak, and it is not my fault.

Thank you both!


I do the same thing... I may just start replying "like" Maybe we should ask the NN for a like button!

#12 DeathRabbit

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Posted 06 December 2012 - 03:09 PM

I hear ya, Asleeper. Unfortunately, I just don't get that many good days. And there are people in my department outperforming me. There's a guy I interviewed, a rather lackluster applicant at first, that is now far and away better at this job than I am. All because I just can't do any sort of planning or focus for more than 5 minutes. I used to be the favorite son around here, now I feel like I'm just tolerated because of my past good performance. Otherwise, I think they'd toss me out on my ass for incompetence.

#13 Megssosleepy

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Posted 06 December 2012 - 03:39 PM

I hear ya, Asleeper. Unfortunately, I just don't get that many good days. And there are people in my department outperforming me. There's a guy I interviewed, a rather lackluster applicant at first, that is now far and away better at this job than I am. All because I just can't do any sort of planning or focus for more than 5 minutes. I used to be the favorite son around here, now I feel like I'm just tolerated because of my past good performance. Otherwise, I think they'd toss me out on my ass for incompetence.


Hopefully the Xyrem will give you some of your old self back!

#14 munky

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Posted 07 December 2012 - 01:56 AM

I do the same thing... I may just start replying "like" Maybe we should ask the NN for a like button!



Like!

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