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Not Sure What To Do

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#1 Outcast031



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Posted 25 June 2013 - 05:37 AM

Hi all. I suffer from Mild to Moderate Narcolepsy. While I rarely have a sleep spell that knocks me out. I do get incredibly drowsy spells where I can barely stand and my mind gets very foggy and dazed. Basically the fact that I used to function properly at work was a miracle as I was kinda on autopilot. 


I became unemployed awhile back (a few months now) and still haven't found a job. I tried to sign up for non retail oriented jobs because I just don't feel like I can keep it together anymore. It's so difficult interacting with people when i'm like this... I get complaints because i'm not bright eyed and bushy tailed...


Part of what holds me back is the depressing thought of going back to a job like the last one where being miserable made me even more sleepy. I also find that ever since the narcolepsy started I suffer from social anxiety which previously I don't recall having...


I'm not even sure I could pass a job interview for a retail job right now. I have such difficulty getting up in the mornings. My savings will dry up eventually. I just don't know what to do. I didn't think I could feel so damn tired. 

#2 doinmdirndest



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Posted 25 June 2013 - 11:01 AM

that is truly sad.  are your symptoms treated?  if not, get an appt. w/a sleep specialist.  it could be a few months or so before your md/you find the right med. 


things will be ok just brace yourself for the long haul.

#3 ApparentlyNarcoleptic



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Posted 25 June 2013 - 06:27 PM

I'm sorry you're going through this :-(  Is there anything that particularly interests you?  I find that when I'm really into what I'm doing it helps stave off the sleepiness.  Also coffee.  Lots and lots of coffee!  But that's me - and also not always a guarantee.


I 100% agree with doinmdirndest - talk with your doctor and if you don't already have a sleep specialist you should find one.  It's important to have a (sleep) doctor who fully understands what you and your body are experiencing so you can receive proper treatment.  There are medications that can help you function, but you need to work with a sleep specialist to figure out what's right for you.  It takes some trial and error (I'm still trying to find my medication cocktail) but there is a lot of stuff out there that can help.  Your regular doctor or insurance company should be able to recommend some specialists.


Don't give up!  There is a light at the end of the tunnel!

#4 Hopeful10



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Posted 24 August 2013 - 03:38 PM

I agree with the previous replies on making sure you are seeing a sleep specialist. It sounds like you have a diagnosis. Was this from a sleep specialist? If so, they can work with you on finding the right medication combination to help with your daytime sleepiness. It may take a while to get dialed in on the right medication and requires effort, patience, and faith in the process.


It is worth to be under the care of a good sleep specialist. It changed the quality of my life. I went from stumbling, sleeping, falling zombie who could barely hitch sentences  together to having a better quality of life and patches of wakefulness during the day thanks to medication, scheduled naps, and understanding my condition and what I need to function. It took tests, then several months of working with my doctor to figure out the right medications and doses, but was totally worth it! It is a partnership.


There is information online about sleep hygiene that can be helpful, but treatment from my sleep doctor is what made all the difference with me along with really understanding my medical conditions not limited to Narcolepsy. There are great resources available through Narcolepsy Network (papers like "Understanding Narcolepsy" that I read and distributed to family and close friends). I found I need to be an expert on my condition and also my own advocate because most people don't understand or even know what Narcolepsy is. That includes other doctors that I see for non-related stuff.


If you are not employed at this time, there are programs to help with getting medication, sometimes free, usually through the manufacturers. Your sleep specialist doctor may need to fill out a form for you to submit. I don't know your insurance situation, but you can discuss it with the doctor and hopefully he/she will work with you. It's a catch 22. You need treatment to help you work effectively. Treatment will help you understand what jobs, shifts, etc. might work best for you and what your optimum time(s) of day may be. 


God bless and good luck to you! Please get the treatment you need and deserve. It can be frustrating along the way, but you will have better days ahead! :)

#5 Rachel_Moron



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Posted 04 March 2014 - 02:32 AM

This is very tragic that you have to go through all this problems :( You may need to looking especially for the telltale daytime signs of sleep deprivation. If you are experiencing fall asleep or feel very tired while driving? or have difficulty concentrating on work? or do feel like you have to take a nap almost every day? or react slowly or something related to it. If yes, then it can be most serious signs of sleep disorder. In such cases you should diagnose your for Narcolepsy stage. Superdrugsaver top health professionals often suggest some tests to the patients who suffer from sleep disorders, that you can go for sleep laboratory test to detect your sleep phase, maintenance wakefulness test or blood test with type of HLA also you can keep your sleep log or sleep diary to note details of your sleep and keep scheduled details. you can keep record of what time you went to bed and woke up? total sleep hours and perceived quality of your sleep, any drugs or medications taken, including dose and time of consumption and so on. Before you join any job you must take decision based on your sleep diary records specially in shifts jobs and it will help you to choose your right job. Hope this sort of info will help you to improve. :)