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I'm Newly Diagnosed With Narcolepsy.
I'm newly diagnosed with narcolepsy. I suspected it for years but was too embarrassed to talk to the doctor about it, as I had to admit I regularly fall asleep at work. Funny thing is, in the same appointment he again diagnosed me with ADHD. So, he prescribed me Ritalin for both ADHD and narcolepsy. Is this the only treatment out there for narcolepsy? What other treatments are there?
What kind of doctor are you seeing?
The Only Neurologist Locally Is Ready For Retirement And Will Only Prescribe Ritalin Which Makes Me Stay Awake All Night And Makes It Worse.
The nearest neurologist besides that one is 2 hours plus away and I can't drive that far and especially not often. I know there are better prescriptions on the market for the narcolepsy what do I do?
With the COVID pandemic, numerous providers added telehealth appointments option. I'd recommend that you contact your health insurance and ask about neurologists offering telehealth, as well as… read more
Tips For Staying Safe If Sleep Attack Happens In Public
hi, I am wondering if anyone has any tips for safety in your day to day life. my narcolepsy is extremely intense and I will sometimes become extremely exhausted in situations that are not safe (ex. on the bus at night, walking around my neighbourhood alone, etc.). I dont want to commit to not having a life, however as a young woman who often gets attention on the streets while walking it is scary to know that I might become completely defenceless out of the blue when going through my day to day… read more
I call people I know because talking helps me stay awake. It's best to have multiple people for this in case others are busy but I've found it very helpful.
Jornay PM For Narcolepsy Your Experience
Has anyone tried Jornay Pm for narcolepsy? I’d love your feedback and or reviews of the medication. I currently take 90 mg of Zenzedi a day and am still falling asleep and unable to focus and unable to maintain a steady job help advice gratefully welcomed ?
Kindly,
Lisa
Has Anyone Ever Heard Needing To Increase Meds (methylphenidate) With Ageing Because Of Tolerance Build Up After A Lifetime Of Dosing ?
Absolutely, I was diagnosed in 2002 when I was 20 years old. I am now 44. It is scary how tolerant I am to stimulant meds. That's just the way it is.
I'vebeen Baffled, Do I Have Epilepsy Or Narcolepsy? Issue: A Seizure When Near Waking From A Sleep Period. I Don't Have Them Very Often.
My seizures usually follow experiencing a lack of rest, and high emotional and physical stress. I've taken Dilantin at first following my first seizure around 16 years in age. I've had several attempts at not taking medicine, then after having a seizure while sleeping go back on it. I'm currently back on the seizure control medicine Keppra and have not had one, but feel like going off it again as I believe consuming foreign substances like this reduces my natural state of being. I've had… read more
Thanks for sharing your experience, I'm not alone. I too take Melatonin.
Getting Put On Vyvanse For My Narcolepsy. What's Your Opinion On It?
Type Of Doctor That Is The Most Helpful
I have known about my narcolepsy for about 23 years and have seen a neurologist, general care practitioner, sleep specialist and everyone in between. No one seems to want to help me. I have been on the same medication all this time and no one wants to make changes.
What doctor does everyone go to that actually understands and is willing to help?
Does anyone know a good doctor in the Raleigh/Durham area?
don't wait until you get tired to sleep go to sleep early 8.00pm and you should have a sleep during the day/also be very careful with driving
How Long Did It Take You To Finally Get Your Narcolepsy Diagnosis? Were You Diagnosed With Any Other Sleep Disorders First?
Around two years after my symptoms became so bad it effected my ability to work
I was lucky because my father paid privately for my sleep study or it would’ve taken a lot longer
After my e.e.g my… read more
Do A Lot Of People Fall Asleep At Breakfast, With Coffee Cup In Hand And End Up Nodding Out And The Wearing The Coffee?
I have this black fleece zip up vest that I have purchased over and over. My kids call it my "uniform". I started wearing it when I had to work as a front desk manager at a hotel. Even my co-workers… read more
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