What Supplements Do You Take? | MyNarcolepsyTeam

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What Supplements Do You Take?
A MyNarcolepsyTeam Member asked a question 💭

I do not take meds. To pursue the doctor route I would have to give up my license and be told I'm wrong until proven right. So I do caffiene. A lot of caffiene. I know there are others in my boat but in many casses people have said they take supplements. The caffeine is killing me. I consume on a good day 1200mg and on a bad day 3000mg of caffeine. Are there supplements I can take to take it's place or at least cut it back?

posted September 21, 2022
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A MyNarcolepsyTeam Member

Marc!!!!!!!!!!!!!!!!!!!!! I am so HAPPY for you! I am telling you L-CM is a miracle! I still need night time meds (Baclofen) but I could care less for caffeine most days. You are probably going through caffeine withdrawals, but as you continue to use it, that will go away. Maybe you can alternate a cup of regular, then a cup of half-caf until you wean off. I still occasionally have a cup on the weekend but don't crave it like I used to. When my feet hit the floor in the morning, I immediately go to the kitchen and consume 8 grams of the L-CM, two hours later, I take another 8 grams and two hours after my first meal of the day I take another 8 grams. I've been slowly increasing my doses. Apparently you can take up to 60 grams a day. I am truly ecstatic for you! 🥰

posted September 28, 2022
A MyNarcolepsyTeam Member

Tamela I started taking the supplement friday night. No suprise I wasn't thrown back to the days of my youth. You do get a little tingle but that could be from the taste. I reminds me of eating lemons. I was affraid it would be like eating asprin so that was a relief. Saturday did well on no coffee until the night I crashed. I was able to get by with 3 cups of coffee. Then came sunday. That was one of those days that you crash and crash. Monday I found I need the caffiene gum because without the caffiene I go into zombie mode or siezure almost without warning while driving. In the end 7 cups of coffee. Which is real good from 50 to 7. Tuesday 7 cups. Wednesday 3 cups. Today 1 cup so far. I was drinking 5-7 liters of water a day. I'm hoving around 2-3. I'm trying to get it so I sip the water instead of chugging it. My blood pressure is down from 230/110 to 180/70 and should continue to drop. After another week I'll test again and I'll test my sugar. I wish I could say I have a workout regimine but maybe by next update.

In the end I want to thank you for saving my life. If I would have conitnue to take in as much caffiene as I was taking in my days would have been numbered. I think now I can start to get things in order. This has been a game changer and the rest of the site should know about it.

posted September 28, 2022
A MyNarcolepsyTeam Member

I have taken Omega 3 fatty acids for improving overall cognition and vitamin B12, but more for energy. I take magnesium intermittently helpful for migraines and the side effect of constipation some meds cause. Caffeine is just a daily OTC med. I don't activate, shift gears or get anything done without caffeine. Vyvanse keeps me awake most of the time - so I just sit in a chair - even if repeated reruns are on, I don't really watch, but don't turn the channel or do chores. I just sit. I have to have a pharmaceutical cocktail in order to function and it is still very effortful.

posted October 2, 2022
A MyNarcolepsyTeam Member

I take L-Citrulline Malate, 3-5 grams a day mixed in 2-3 ounces of water (no caffeine or protein for 30 minutes after) two to three times a day in lieu of stimulants. I also just started L-tyrosine, currently at 1000 mgs on an empty stomach for EDS. At night I am taking pure glycine, magnesium glycinate and baclofen (the only pharmaceutical I take.) I purchased some L-theanine yesterday to add to my night time meds and misplaced it, as I had a bad narcolepsy day yesterday 😂 But, before that, I had been almost a month without a single day of EDS or brain fog. If I had to choose one supplement to try, that is the most beneficial, it would be the L-Citrulline Malate. It has been a GAME CHANGER!

posted September 21, 2022
A MyNarcolepsyTeam Member

I did caffeine (before finding out about this illness) for 13 years, not knowing what was wrong with me and the only thing I learnt from it is that it had no effect whatsoever on my daytime sleepiness, just made me more irritable, but didn't stop the sleep attacks. Having said that, as far as supplements go one important one is vitamin D (but you've got to get your levels checked). If it's low supplementing can actually help, because the brain uses it to control sleep and circadian rhythms. (For example, don't take it at night because it suppresses melatonin production). Because the brain uses it to control circadian rhythms (there are vitamin D receptors in the hypothalamus where sleep is controlled), when it's low, it will worsen your sleepiness, but if it's not low, I should think supplementing it won't make much of a difference and taking too much can be toxic, so before doing anything else, get your levels checked and take it from there. If vitamin D levels are low, supplements can help. I also suspect that because the brain uses vitamin D to control circadian rhythms and sleep, having a sleep disorder maybe makes the brain use up more than normal in an attempt to compensate for lack of orexin maybe, predisposing us to a deficiency. It's a known fact that narcolepsy type 1 is linked with vitamin D deficiency even if they haven't discovered why. I'll just add that I have completely given up caffeine and I feel so much better. (I now have normal vitamin D levels too-55, used to be 9) Good luck!

posted September 21, 2022 (edited)

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