Index Support Center Forums Living with N Getting serious about N and C

  • This topic has 7 replies, 6 voices, and was last updated 2 months, 3 weeks ago by Ferret. This post has been viewed 686 times
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    Hi all, new to forum but has been 10 years since diagnosed with n and c. Wanted to introduce myself and comment how these communities seem to be more on the cutting edge of Research than many doctors.

    I am getting serious about my health and want to learn more about my condition; and especially how to treat it. When I was first diagnosed I was placed on provigil but stopped after two weeks due to the feeling it gave me. Since then I have treated it with taking naps every day, melatonin, sleeping aids, etc. Hate, hate, hate the C and feeling prevented from experiencing the fullness of life.

    Going to a sleep doctor now and doing another sleep study test Monday to get charts for possibly trying Xyrem or venlafaxine. Anxious to finally deal with this thing and finally start living to the fullest.

    I’ve read about the long term consequences to your body of these meds, however. In process of getting very healthy; exercising daily and eating consciously. Anyone do non-rx treatments like CBD oil?

    Interested in any and all feedback!


    @nincolorado Welcome to the forums! Ferret uses cannabis oil and nicotine to treat symptoms and has some good threads on it. Nicotine is a stimulant and may be effective in some people for cataplexy. I don’t know much about cannabis but CBD alone is unlikely to do much besides maybe enhance sleep quality. Venlafaxine is effective for treating cataplexy but due to its inhibition of serotonin, it can cause sexual side effects. Xyrem, which is quite literally GHB, is a very weird substance and is very hard for many people to tolerate. Traditional stimulants like Ritalin/Adderall are very wake promoting and have some anti-cataplexy properties at higher doses.

    Personally, I’d use Xyrem as a last resort option. What feeling did Provigil give you and what dose were you on?


    I have directed the OP to the Cannabis Oil Cheat Sheet thread in the Non Rx Strategies forum. And no, CBD alone will not enhance sleep quality UNLESS the quality of your sleep is affected by pain or stress. Even then it should be taken during the day since it tends to have a stimulating rather than a sedative effect if taken at bedtime.


    Welcome, congratulations on taking control As you will find out on these forums there are many options available to you, however, none are overnight miracle fixes so please be prepared to give it some time. Regardless of which treatment option you and your physician decide upon nothing is going to be more important than lifestyle changes. You will find that plenty of sunlight, exercise and eating a good diet will do as much for you than any medication.
    Have you been reminded to stop all meds prior to your next sleep studies? Im sure you have been but if not this is a necessity.
    I certainly wish you the best. Stick with this forum there some extremely intelligent and experienced folks here who will do everything possible to assist you on this journey.


    Thanks for the responses! I’ve found Ferret’s cheat shear very helpful to the cannabis route but also to help understand brain function and why the condition could negatively affect my overall health.

    I can’t remember the dosage of provigil but it was moderate and made me feel anxious and super jittery. Like a nervous wreck. I want to try Xyrem as the last resort due to the long term risks but I also want to sleep better as health conditions in my family are all ones exacerbated by lack of sleep- dementia and cardiovascular disease.

    It’s wearing on me to always be tired and have to balance work and kids as a single dad. Really getting old. I also want to take my physical fitness and exercise to the next level and really get in shape. I’ve started eating completely differently and taking N into account.

    Again, thanks!


    Xyrem was a game changer for me. I hope it goes (or went) well for you.


    Nowadays, problems with sleep are very common, and they really have become the problem of the 21st century. I suffer from severe insomnia, and can only fall asleep with the help of sleeping pills. I’m against various (all!) kinds of medicines, so I’ve been trying to find a more natural and effective alternative. On a forum, someone suggested that I try cannabis or any of its derivatives. I’ve started taking a CBD oil, but very quickly I’ve got tired of this form of use and I’ve read that a sufficient amount of cannabis is contained in the composition of special sweets. My favorites are gummy bears and marshmallows, which are also quite delicious. I think you will be interested in a store where I usually order them.


    Then I suggest you try CBD oil to relax you but don’t take it after 6 pm. I take it at 6 am and 6 pm.
    Depending on what kind of sleeping pills you are taking, you may have to be weaned off them with the help of your Doctor. Do NOT stop them cold turkey without talking to your Doctor.
    Are you Narcoleptic?

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