I have suffered with my narcolepsy most of my life with only my mom as support. I was told when I was 8 that I might have it but due to circumstances beyond our control I wasn't diagnosed until my mid. 20's. I still haven't been on any medication for it. The ones prescribed are too expensive. I reached out a few years ago to a local health magazine and they did an article on me. I was trying to spread awareness and maybe get some help. I did get pointed in the right direction for medication help but now my doctor is being a complete ***. He diagnosed me with sleep apnea as well. Now he is all focused on that and keeps talking of getting that under control and won't help with my narcolepsy. I COULD SCREAM! I have had this nearly my whole life...it's not going away! I am just so fed up I don't know what to do. I really need some meds. I just feel really lost and hopeless right now. I don't know about yall but stress seems to make all my symptoms worse so yeah...not doing too good right now. I would appreciate any support yall can give. Thanks...Dee
I think your doctor isn't listening to you, plus there is tons of assitance that you can tap into for drug payment assistance, but you have to actually be prescribed the meds first. Why is he so against treating you for narcolepsy?
Here are some alternative therapies you can consider integrating into your routine as a means to help your body function better in terms of treating your narcolepsy:
According to Rubin Naiman, Ph.D., author and sleep specialist at the Arizona Center for Integrative Medicine, medications such as Provigil help people with sleep disorders to function more normally by masking symptoms of sleepiness. They do not treat the underlying cause of the disorders. Nor do they address the mental-emotional- spiritual aspects of the basic human need to sleep and dream.
While he agrees that medications may be necessary in the treatment of acute cases of narcolepsy, Dr. Naiman suggests those with the condition can learn to sleep more healthily by optimizing general nutrition; eliminating alcohol, caffeine and nicotine, exercising regularly and napping routinely for 15-20 minutes as needed. Nutrients that can help manage narcolepsy include calcium and magnesium, choline, chromium picolinate, coenzyme Q10, omega-3 fatty acids, B vitamins, vitamin C complex (including bioflavonoids) and vitamins D and E. Some research suggests that the supplement 5-HTP may help those with narcolepsy by reducing the duration of cataplexy and improving nighttime sleep.
In addition, food intolerances may be linked to narcolepsy. Ask your physician (or a nutritionist) about an elimination diet. Wheat, dairy products, corn and chocolate are the foods most commonly implicated. Dr. Naiman further recommends breathing exercises to manage stress, and encourages the recording of dreams in a journal to better understand them and to explore the psychological and spiritual impact of sleep disorders.
Working with an integrative sleep specialist may be an important part of the recovery process as well.
(drweil.com)
Hugs-
CK
Thanks for your advice. I am not sure why he is not listening to me. All those Nutrients you mentioned, are those in a specific multi-vitamin? I rarely drink and I don’t smoke so those won’t be a problem. I do take caffeine pills though to try to help with staying awake. Sometimes they help and sometimes they don’t. I will go to a nutrition store and see if I can find something with those nutrients in it. Thanks again for your suggestions.