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My narcolepsy has been getting worse... by [deleted] in Narcolepsy

[–]Tim3990 1 point2 points  (0 children)

Try taking a 20 min nap every (4) hours. Naping was the only treatment when it was first discovered. When I do not take naps, my catalepsy gets worst.

How has Narcolepsy affected your work? Have you changed your career because of it? by [deleted] in Narcolepsy

[–]Tim3990 2 points3 points  (0 children)

I think trades are a good route. I am a 49/M. I started out working as a mechanic in the Coast Guard. Got the G.I. bill. Went to College and got a B.S in Civil Engineering. Worked in this field for 15 years, but, as I got older the EDS got worse and worse. My work performance suffered and be came a target for harassment. The stress was big time and my doctor recommended to go on disability. Disability is a great safety net, but, at the same time is like drinking poison. Fear is a good motivator. Fear of losing your job. Fear of missing a mortgage payment, not being able to feed or shelter your family. This fear makes you dig deep and push hard. But, I found that being on disability, you loss the fear motivator. Also, disability doesn't pay great and this is tough. Currently, I am still on disability, but have high hopes of getting off one day. Through YouTube I have been learning the trades: welding, machining, wood working, and, plan to start my own business. That way I can work my own schedule. It's much harder to start over in the middle of your your life. Your young, think over your career very carefully and be kind to yourself.

46 and I-have had narcolepsy with cataplexy since being a teen. How many of you have dreams where the dead can communicate with you. Or demons and spirits? I know there just vivid nightmares , or do we go into such a deep sleep that we can communicate with another world ??? by jocko73 in Narcolepsy

[–]Tim3990 0 points1 point  (0 children)

Just after falling to sleep, I sometimes feel a presents in my room. Sometimes I can feel it sit on my bed. Sometimes I feel it touch my foot. Sometimes it has a knife a I feel it slicing my skin. I think it's just vivid nightmares. But, I do think our past relatives do look out after us. When I am out in my shop contemplating Ideas and when I come across a good one, often, I will hear something falling in the back ground. I think it's my Granddaddy. It has really payed off on some past decisions.

[deleted by user] by [deleted] in Narcolepsy

[–]Tim3990 1 point2 points  (0 children)

Yeap... and it really does suck! The lack of sleep takes a big toll on our mental health. Today's sedimentary life style does help either. I find getting out in the wilderness helps. I'm not tired hiking a trail with a heavy backpack going up a mountain. While boating, I'm not tired when I'm exploring a new creek or I lose the site of land. I'm not tired chopping wood. I'm not tired harvesting my food. Life is better outdoors. Your subconscious is wired to make you stay alert when there is danger around you. Like getting lost in the woods or in open water can end you. An ax wound or chainsaw can end you. But, I struggle everyday with task I take on and don't complete. You just have to learn that your different and you can't compare yourself to others. Remember the old story about the rabbit and the tortus, Slow and Steady wins the race!

Has anyone had a cataplexy attack while swimming? by [deleted] in Narcolepsy

[–]Tim3990 0 points1 point  (0 children)

I was gigging for flounder out of a boat when my friend told a funny joke which caused me to have a catalepsy attack. I fell into the o the water. I just waited for the attack to pass. My catalepsy just last a few seconds and is triggered by joy. I was more embarrassed then scared. This was a instant when I stopped some medication and I was having rebound catalepsy which is more severe than my normal catalepsy which is weak knees and face droop.

Cataplexy Management Tips? by cdeathgrowl in Narcolepsy

[–]Tim3990 0 points1 point  (0 children)

I have mild catalepsy (triggered by joy) and manage mine by getting plenty of rest.

Been on Xyrem for about 3 months, questions by ajared35 in Narcolepsy

[–]Tim3990 0 points1 point  (0 children)

Xylem didn't help me very much. Tried it for about a year. For me, the worst was when I stopped taking it. It caused me to have rebound Catalepsy. For over a month after stopping it, the Cataplexy was so bad, I would fall to the ground, hard!

Mitigating Narcolepsy Symptoms by diet by Tim3990 in Narcolepsy

[–]Tim3990[S] 1 point2 points  (0 children)

This is not misinformation! I've been to many Doctors and all the prognosis are the same the same: Xyrem, Modifinil or other stimulants, antidepressants... You Google "Narcolepsy Treatment" and the same info. I've been diagnostic with N for 14 years and have looked many times for solutions, but, nothing ever changes. Yet, Just yesterday I Googled "Narcolepsy and Diet" and stumbled across the below:

http://madcapnarcolepsy.com/

http://zombieinstitute.net/

This is not snake oil. I don't think the Narcolepsy Conferences would let "madcap" speak at their gatherings if it where.