18 hours a day in bed
I am being treated for narcolepsy based on symptoms (i could not finish my MSLT test due to not being able to go off certain meds. Therefor, i do not qualify for Wakix or Xyrem). I have been on modafinil, armodafinil, sunosi, methylphenidate and adderall or a combination therof at max doses and am still completely treatment resistant. I have two small windows in the day to bring my kids to school and to have dinner with them. The rest of the day i am in bed either napping or with my eyes closed resting because im too exhauasted or my body feels too weak to get up. I also experience bad headaches/nausea and dizziness through out the day. Has anyone dealt with this much time in bed? For reference I am 37. Are there other diagnosis I should look into? Thoughts/ advice?
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Not to make light of your sleeping issues, but I'm the oppocite, and need a vacation of doing nothing but, eating, drinking and sleeping for 18 hours. After 66 yrs, I am SO sleep deprived, its effecting me greatly even with power naps. I could not imagine over sleeping daily. You say you are on medications, could some be a hindrence? I do not take any meds. I'm exhausted with the 24/7 vertigo spin and lack of sleep. My brain does not have an off switch. Where did you find yours?
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2 ReactionsWhen you are able to sit still, what else are you doing.
I live alone, have diabetes, ADHD, anxiety, brain fog due to cancer treatment. I still work but spend mornings when I wake, sit in total darkness, same before bed. No cell phone, no TV. My bed room has black out curtains.
I have an advantage - I use a device that was prescribed by a therapist, Alpha Stim. I use this 2-3x per day to keep my mind present, vs swinging between anxiety and depression. It also works for insomnia.
I used to take melatonin and magnesium, now only drink Chamomile tea.
It took years to get to this point, lot of trial and error. I hate medications, since I depend on myself, I fight as much as I can. Sitting still and present is the goal.
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2 Reactions@msmarymac I'm 62 years old and suffer from insomnia and vertigo. I have a prescription for trazodone pills for sleeping but they don't always work.
@ladybugg
I can't take sleeping pills.
Tried herbal/natural remedies, no luck. Booze, anykind, slows down the spin and gets me a little sleepy, enough to nod off. I don't take much, just a 1/2 glass of wine type of thing. Not every day. The last thing I need is my kidneys and liver giving me lip.
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2 Reactions@malebreastcancer47
I grow Chamomile and put out in my herb house for free will donation mostly. My bunnies love the greens.
I plot and plan projects, get-aways, write books, art projects, it's like I'm on speed in my head. Recently calculating a duck mahaul habitat, dimentions (limited space), materials, cost.. limited income, one part at a time. Just put in the pond, new surrender to my animal refuge (16 years), a goose. Painting the last mural on 3' round boards w/ 4" center hole, to scew over new ceiling fans...too many projects and mantainence work for an old widow. Lol. I love my life, but dont know how much longer I can keep this pace up.
What do you do, sitting in the dark that is productive?
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2 ReactionsIn the morning, I make coffee and sit in the dark. Think about nothing. This is when I plug in the Alpha Stim. Its not about productive, but to let go. What the Alpha Stim does, for me, it disrupts the electrical signals in my brain. Normally my brain is very restless, always in deep thought. Its a hobby but it also keeps me from sleeping. The Alpha disrupts. I do it for 1 hr in the morning and 1 hr in evening before bed.
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2 Reactions@malebreastcancer47
That is only for an hour in the morning and evening, how do you occupy yourself the rest of the time? If you sleep 18 hours, on machine 2 hours, that's 20, you still have four more hoursto the day. That inspdiscribable life can not be healthy, not being out in the sun shine and fresh air, going for a walk, any scense of normalcy. Are you saying you don't have the simple, basic joys of life?
@msmarymac You are mistaking me with the person that posted this topic.
I work full time. I am a principal business analyst in healthcare. Between commuting to/from work, work itself and personal time, I get about 7-8 hrs of quality sleep. I am not married, nor have kids.
My definition of productivity now is to slow down at work, exercise my brain with Alpha Stim and Neurofeedback while using the gym for physical exercise. I work smarter now post cancer. I make time to sit still. 🙂
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2 Reactions@malebreastcancer47
My bad, so sorry.
Glad you are happy.
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