Narcolepsy Support Group

A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.

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Sleep Disorders
/ Narcolepsy Support Group

Not me anymore.

Mousey22
Mousey22

Hi everyone! I'm kind of new here so please bare with me. I have sleep apnea and narcolepsy and some other health issues. I got diagnosed with narcolepsy about a year ago. But looking back over my life I can see the footprints of both sleep apnea and narcolpsy as far back as my teens Which is a long time seeing as I am 52 ears old. However I can see a dramatic increase in my symptoms over the past 3 years since my mother passed away. I will say sleep apnea does run in my family as my dad found out he had it back in the late 80's. My sister also has it. Anyway the past year has seen an even bigger increase in symptoms. I've always had memory problems but now they are worse. I can't consentrate very long, can't stay focused, very easily distracted. I'm forgetting to pay bills, forgetting doctors appointments which isn't good because I take blood thinners.Last May was the first time I've missed an appointment for blood testing since 2009 when I had to be put on them. I missed one again yesterday and several in between. I've always been very meticulous in my house cleaning and everything else. I've been accused of being OCD. But now I can't seem to get anything done. I'm always sooooooooo tired I can't even think about it which DRIVES ME CRAZY!!!!! There are things I need to get done and can't. My medicine gets me through work, barely, I can't be honest with my  doctor because I'm afraid he'll put me on something stronger and I don't feel comfortable with that. I'M NOT ME ANYMORE!!!!! I don't recognize me now and I don't like the me I am now AT ALL but feel there isn't anything I can do about it. I don't have anyone around close to talk to. My sister lives about 1.5 hours away. I can't do the kind of work I've always done and am currently stuck in a job I totally hate and is hurting me physically but because of this and major back and neck problems don't even know where to start looking. It's so depressing. Can anyone relate?

arfie
arfie
Hello Mousey. Welcome to DS. Sorry for what brings you here, but glad you are here.

I can't relate too much with your general symptoms, but I relate fully to the frustration of trying to figure out what is what in this confusing blend of the psychosomatic, physical and disjointed stigma called Narcolepsy. Sifting through ^it^ is all the more confusing because people with Narcolepsy don't seem to speak to one another. This forum is no exception. It is one of the slowest forums on DS. I keep it on my newsfeed, just in case, but. . . Sigh. . .

DS is a big site with allot of other forums to gain emotional support from. I hope you will take the time to surf around and see if there are other forums which might provide the emotional support which can make such a big diff in sifting through ^it^ all.

Welcome aboard.
Katri
Katri
Hi Mousey, Sorry to hear that your feeling this way. I can relate to some of your feelings and experience. It can be a depressive condition... can limit what you can do and can affect relationships, friendships and employment. It's difficult in work because of the lack of understanding of how debilitating Narcolepsy can be. My partner has sleep aponea. What one realistic thing could you do that would help you at present?
Mousey22
Mousey22
Hello Katri. Nice to meet you and hear from someone with this condition. At present there is nothing I can do but take my medicine on the days I work and sleep the days I don't. I only take it on the days I work because I don't like taking medicine in the first place and the one medicine is a controlled substance. I think of it as a legal form of speed. My doctor was really pleased when I told him I only take it on days I work because it is addictive. The side effects (of which I have been blessed not to have so far) are very disturbing. But as long as I'm up moving around it gets me through work. I'm lucky the folks I work with know about it and understand to some point about it. My manager knows someone who has it so she understands it some. It helps some.
kkbon19
kkbon19
I haven't been on here in awhile and just joined this group. I didn't quite meet criteria for narcolepsy and am currently diagnosed with hypersomnia and I think Chronic Fatigue.... anyway. My sleep issues escalated about 4 years ago while my ex was cheating and through the divorce, but I also had early symptoms like sleep paralysis over many years. I do not have sleep apnea. I totally relate to the cognitive symptoms though. I just quit grad school ABD because I can't function like I used to. It's very embarrassing and no one understands because I don't "look" sick AND I have insomnia,, which they don't understand. I'm sad this group is quiet because I could use some empathy. Hope I can give you some.
Mousey22
Mousey22
Hi kkbon19! And welcome! I do have both sleep apnea, (which I inherited from my dad) and narcolepsy. My symptoms really took off after my mom died 4 years ago come the 24th. My life started coming apart and the narcolepsy took off full steam. But looking back over my life I can see the footprints of it for a loooong time.Just didn't have any idea what was going on. That seems to be very common for people, if you don't look like death warmed over then you must be fine. If they can't see it or feel it then it must not be real. Let them walk a mile in our shoes and they'd sing a different song. It does help to talk to people who know and understand!! I can't be on here a whole lot because i don't have internet but my son does so i come to his house to use my computer. Hope this helps. Know we may be quiet sometimes but we are here.
Cicatrices
Cicatrices
Hi Mousey, welcome. I have idiopathic hypersomnia but I joined the narcolepsy group as well, because like arfie said, both groups have slow forums. I can totally commiserate with the fact that our conditions are largely ignored. Like you said, if you don't look like death warmed over, no one believes anything is wrong. Silent and invisible illnesses are an unbelievable burden and it is nice to have a support group here. Hopefully more members will be available to chat and share our experiences.
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