r/Narcolepsy • u/AgitatedIndustry5050 • 2d ago

Medication Questions Just got diagnosed

So after 4 years of struggling I have been diagnosed with narcolepsy accompanied with cataplexy the doctor has prescribed me modafinil ( 100 MG each morning but said if I don't think it's enough i can take a second one at noon) for now I only take one in the morning and venlafaxine (37,5 MG also each morning) the doctor suggested I start with minimal doses and getting a more organized life style a stable sleep schedule and taking 2 power naps ( 15 min no more ) . Lately I have been struggling with really bad headaches and dizziness but I don't know is it normal since my doctor is on vacation . So is it normal for me to experience this knowing that I have been taking the medication for 2 months or is it a side effect of my messy lifestyle since I am on vacation so I am all over the place and forget to take the power naps plus I really struggle to sleep at night specially that I notice I started to have a breakable sleep cycle ( I sleep for some time wakes up do random things until I fall asleep again 3 times to 4 times ) . I would really appreciate your advices ( diet or lifestyle) to make things more bearable since college is starting again.

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u/MoonlightOnSunflower 2d ago

I just got diagnosed too. My doc told me modafinil can have headaches as a side effect. I don’t know if that’s what you’re experiencing because there are so many possible factors influencing your headaches, but it’s worth talking to your doctor about.

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u/AgitatedIndustry5050 2d ago edited 2d ago

Unfortunately, he is on vacation, so I have to wait until he gets back and talk to him about this . But still, thank you so much for the info. I wasn’t aware of the side effects of the medication.

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u/Oldcarolinagurl 1d ago

I had HORRIBLE side effects for one month. Until the day I woke up making plans to DO something. Prior to that I had to debate if I had the energy to make it to the bathroom or drive one mile…. Now this med is my lifeline to somewhat normalcy

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u/Jujukat2695 1d ago

I take Wakix. It’s changed my life. Provigil didn’t do it for me. I was also so dizzy on Provigil.

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u/Maxim199471 1d ago

I cant tolerate any real stimulants. Wakix changed my life as well.

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u/Jujukat2695 1d ago

The only thing I struggle with is it makes my heart beat “differently” which is to be expected according to the manufacturer and ok per my dr. It also made me hyper sensitive to the sun and I got a cellular sunburn on it after starting it this year. I hope to never get off the stuff

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u/Weinerbrod_nice 2d ago

You can check if headaches and dizziness are on the list of side effects for your meds. It sounds plausible that they are a side effect of the medications, but I didn't experience anything similar while on Modafinil.

My advice is to try different meds, at different doses, and find what works best. There's a certain type of medications called Sodium oxybates which (imo) is the best and most effective. It makes you sleep through the night without waking up many times. If you are in the US Xyrem/Xywav is usually pretty readily available (judging by Reddit, I don't live in US). But even outside US its often prescribed. So perhaps higher dose of Modafinil, and if you still feel shitty, inquire about Sodium oxybates.

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u/AgitatedIndustry5050 2d ago

That sounds quite interesting. I will try to discuss these options with my doctor as soon his vacation ends . Thank you so much.

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u/Turbulent-Status-107 1d ago

I also got my diagnosis 2 months ago and I started with modafinil and wakix. I also got headaches from modafinil and sweats during the night from wakix but it passed after a couple of weeks, I guess my body just needed to get used to it. I don't know if side effects can also develop after a certain period of taking the medication but headaches and I think dizzyness aswell are common side effects.

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u/AgitatedIndustry5050 1d ago

I also did notice the sweats, plus my body temperature has become higher as someone who always felt cold and needed to cover even in summer the summer has become unbearable for me .

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u/Turbulent-Status-107 1d ago

It's crazy, i've heard from so many people who take wakix and experience the sweats but I haven't found it on the side effects list.

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u/Turbulent-Status-107 1d ago

nevermind, just looked it up again and sweats are high up on the list and hot flashes also

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u/AgitatedIndustry5050 1d ago

The worst part I have become is the mosquitoes main target . Usually, I am the one who will end up with the least bites, but nowadays, it is totally different, I can be the only one in the room who got bitten.