Hello,
Guess I should have read how the sight works before I did my first post '_' !!! I posted under a question, my post has nothing to do with the question being asked.(sorry) I am excited about actually communicating with people who have narcolepsy also.I also sleep apnea.I take the max of the provigil 2 200mg. twice a day and adderall cr 2x a day.
I have never spoken or met anyone who has narcolepsy since I was diagnosed about 9yrs. ago. I am 42 yeasrs old and have had syptoms since I was about 10 years old. My teacher called and told my mother I needed to get more sleep. I've spent years trying to explain to people that this is more than just being sleepy!!!! I spent years feeling quilty about being tired and thought of as lazy. I was soooo happy when I was diagnosed. To find out I actually had something. I remember being upset when the Dr.told me my thyroid was fine. I was put on antidepressants and sleeping pills. Who wouldn't be depressed raising 3 kids and a husband who thinks you lay around all day and sleep. It is only by the Grace of God that my kids and I are alive. I remember telling them to wake me up when the light turns green.As a matter of fact.I just woke up.I need to know does going bed and getting up at the same time really help? I so look forward to hearing from someone.
You are in my prayers. It is very difficult and majority of the people do not have any idea of how you feel and deal with this situation. Wishing you health and happiness. God bless you and your children.
I actually would be interested if it is not to late. So few people understand how Narcolepsy really does effect someone’s and there are varying degrees everyone is not the same or respond to the medications.
Thank you so much for your prayers. I appreciate you all responding to my post. It has been a somewhat lonely journey with no one really understanding what I(We) experince on a daily basis. It csn be very frustrating. I would love to talk about Narcolepsy on the radio or anywhere!!!! Yes there is sop much more to it than falling asleep. I don't have the cataplexy but, the not sleeping for no more than 2 hours at a time. That's rather uncommon its usually more like 15 to 30 min. at a time.I can't stay asleep!!! Therefore I am always tired Inadditon to the Narcolepsy I also have Sleep Apnea.
I completly understand your frustration. I was diagnosed about 20 yrs after I started showing symptoms. I was at a neurologist for my husband and the dr noticed that i kept nodding out and waking back up. He talked some more w/my husband and after sleep studies, etc. I was finally aware of why I acted so weird sometimes! I was accused of being a lush or drug addict for many years. It used to make me cry. But I realized that no matter what you do, some people will just roll their eyes and still think you are "lazy or crazy". Anger and resentment will only stress you and make you act more symptomatic. So I just take care of myself and if someone doesn't like it, they know where to go. I pray for them because they really need to become more intelligent and kind. I hope they will one day but I have learned not to care about what they think. When they pay my bills, I might care. But until then, I choose what to do w/myself. I understand how you feel, it has taken me years to get to this point. Try to live for yourself and take support and kind words where you can. It will make your day. It will become easier w/time.
After I was first diagnosed my parents went to a conference with me on narcolepsy and used it as weapon to focus on all the things in me things they did not like or could not understand...including hypnagogic hallucinations which I did not have and have never had.....the lack of ability to empathathize even when love is there is hard felt with this disorder....learning to forgive is paramount....
I’m sorry you experienced that with your parents. It is difficult when those closet to us and the ones we would expect to support us at least on some level do not. It is frustrating and it hurts. Forgiving is indeed paramount which is on going when it is a family member or someone you must deal with regularly. Keep in mind the theory of the long handled spoon…Some people need to be handled just that way especially if you find yourself getting upset; your first priority is to maintain your well being mentally, physically, and spiritually. And believe me…I am saying this to myself as well. It’s important to find some people who are supportive and encouraging. Best of Luck and God Bless 