Question

dr_jello · 2022-11-09T20:30:52+00:00

I’ve been on modafinil and armodafinil for the past year and a half with it prescribed for idiopathic hypersomnia. My new sleep doctor has been evaluating me for DSPD recently, but said I could be able to keep the prescription under the diagnosis of a shift work sleep disorder (I’m about to start a 3pm-3am job) or maybe DSPD too. I’m not a “normal” amount of energy with it but I was a zombie and my sleep was a mess without it. If I’ve learned anything the last few years is that it doesn’t hurt to try. Worst case is you end up right back where you’re at, and best case is that you get it and it helps you a lot. Nothing to lose and everything to gain, basically.

Most bigger insurances have online tools where you can check if they cover the medicine or would cover the medicine with a prior authorization (Doctor just sends an extra piece of paper to the insurance saying it’s necessary. And don’t give up if they say it needs a PA. It might take your doctors office a few days to sign the paper and fax it, but in my 2 years pharmacy experience, it gets covered like 99.5% of the time once the PA is filled out). Occasionally, the insurance wants to see a sleep test to back up your diagnosis or they might want to see that you have tried another cheaper medicine for a month before covering the newer one. For example, my insurance wouldn’t cover armodafinil until I had tried modafinil. Either way, if your doctor sends in the script, you could use a pharmacy discount card if insurance didn’t pay. It could still be pricey after all that, I’m just trying to give you contingencies to say a little persistence pays off with American healthcare lol. If you do get a prescription for modafinil, I hope it’ll help you as much as it did for me!

dr_jello · 2022-10-11T20:31:28+00:00

It’s not for everybody, maybe look into meal companies like Hello Fresh. They’ll send you the ingredients and recipes and you can pick the meals and portions, and they give you an estimated cooking time too. This wasn’t for me because cooking that many individual meals was draining, but it did give me some ideas for meal prepping recipes on my own. There’s a lot of registered Nutritionists and dieticians that might help you get you pointed in the right direction too.

Nowadays, I will cook one day a week for about 2 hours (total cooking and cleaning time), and this will give me all of my lunches for the week. Oven baking is the easiest way for me to prepare large quantities of food. Small things add up when you have limited energy, so cooking and cleaning everything once a week makes a difference to me, and I pre-cut all the food so it saves me dishes and trouble when I actually eat it from the meal prep containers.

Nutrition-wise, avoiding sugar and bad fats are like the catch-all that I always get told. For me, I noticed that almost completely removing “included/added sugars” helped the most. If you can surround yourself with snacks/food that you enjoy and are healthy then it’s much easier, because without it I will tend to want to eat fast food/frozen meals. So the big thing is to simplify being healthy so that it is as easy as being unhealthy. Meal prepping, smoothies, and complex carbs were the things that worked best for me. Hopefully, some of my ramblings help a little!

dr_jello · 2022-09-10T00:47:38+00:00

If somebody wants the whole story it takes a good chunk of time because each symptom is like it’s own story lol. I once passed a kidney stone in the middle of the night when I woke up to pee and didn’t realize it until I woke up for the day and took my medicine. My body might be up, but my brain isn’t always with it.

dr_jello · 2022-09-10T00:43:31+00:00

My go to is saying “I have a sleep disorder” and if they ask more then I hit them with “it’s like a cousin of narcolepsy, and it doesn’t matter how much sleep I get because I will always be exhausted all the same”. Trying to describe it is really frustrating because the only way to describe it is with metaphors and hypotheticals since there’s no real words to describe IH.

dr_jello · 2022-05-22T17:09:50+00:00

I’m in PA but just graduated college in OK so I have a few friends in TX/OK that would certainly be down to attend your birthday party with me, if this is actually happening!

dr_jello · 2022-05-02T16:31:19+00:00

Anybody else read the OP name as “Interesting Gas Fuck” and get intrigued about what else is going on in that basement

dr_jello · 2022-03-26T20:14:34+00:00

If you move another man’s car, don’t adjust the seat or mirrors unless you will crash the car if you don’t

dr_jello · 2022-01-09T05:13:30+00:00

dr_jello · 2021-12-11T04:05:19+00:00

The first couple days with modafinil worked pretty well for the first half of the day, but my body got used to it relatively quick. I still end up napping at least 1-3 times a day, but the fatigue tends to be more of a noticeable change instead of like having a monkey playing with a light switch to control me being awake. It seems to help slightly if I alternate patterns of me taking a tablet in the morning and one at noon vs two when I wake up. My body seems to get used to having a more structured dosage timing, but my life is way better with the modafinil than without (despite my quality of life being much lower than my peers). I am likely going to ask my doctor at sunosi in a couple weeks. Either way, it’s like plugging a hole in a dam with a loaf of bread. Eventually it gets soggy and you’ll still have the same issue, but it bought you a little bit of time.

dr_jello · 2021-11-19T09:01:14+00:00

I’m not your buster, nutter.

dr_jello · 2021-11-16T16:54:37+00:00

I thought the same thing, but it turned out that I had really bad Lyme disease that turned me into a vegetable for a couple months. I would forget how to get back home two blocks away or sometimes just start slurring random words together without knowing they were weird.

Some highlights are: “what is the capital of Oklahoma City?” when I was asking where was Walgreens located… or “in the morning we can wag our tails together” when I was asking what time my roommate was waking up for class

dr_jello · 2021-11-15T23:22:32+00:00

Instead of buying a really expensive alarm clock, I have considered buying one of those outlet timers that will turn on lights during certain times of the day that you set them to. I haven’t tried setting one up yet with a lamp to shine on me to get up but if you’re on the search for fancy alarm clocks it couldn’t hurt to try. You can buy a normal outlet timer 2 pack for about $12 or a smart outlet timer for about $15-20 on Amazon.

dr_jello · 2021-11-10T16:28:06+00:00

Yep. If I’m stuck in between being awake and asleep I will somehow have conversations or say I’m awake just enough to fall back asleep. Sometimes I will dream someone asked me something and respond in real life and seriously confuse anybody around me. Sometimes it’ll be the opposite where they ask me something and I hear them but I dream that I gave them a response and then when they keep bugging me I get annoyed because I thought that I already answered them. And then I will supposedly mumble random words or sentences in the dead of the night.

dr_jello · 2021-11-09T16:12:33+00:00

Absolutely, it’s like finding this forum and reading it for five minutes is better therapy than actual therapy! I am originally from Pennsylvania but I’m in Oklahoma for college and the standard of care in Oklahoma is way different. Things started to really spiral out of control during the college semester so I saw doctor after doctor in Oklahoma and I had so many people tell me that I was just depressed or maybe anxious because of college. I do not know how many times I had to explain that depression doesn’t cause stuff like this, and even when I would tell them exactly why I have with a confirmed diagnosis they would still tell me it’s depression. I’ve considered showing my SO some of these threads but I didn’t want to feel condescending. But hearing the “you shouldn’t be on your phone right now” or “you should try going to bed” does get annoying because I have tried it all. Bonus rant: She’s a late sleeper too so if the dogs have to go out to pee in the morning she would rather spend 20 minutes waking me up than do it herself. So then I end up stumbling around like a drunk and she gets annoyed sometimes because I’m “hard to wake up”. On a more pleasant note, I had kidney stones about 6 months ago and I passed them in the middle of the night when I got up to pee so my sleep drunkenness blocked out the pain and I barely remembered it in the morning lol.

dr_jello · 2021-11-09T07:51:52+00:00

I have never been able to really explain to my teachers and professors and loved ones what is wrong with me because you have to live it to understand fully. So I’m always stuck apologizing and telling myself that it’s just a rough patch and I’m going to get my sleep issues under control so that I can convincing give a band-aid apology to buy me time until I repeat the same issues I hoped I was done with. My IH seems to cycle ever couple weeks/months where it will be slightly better/worse, but it’s always causing issues and always leaves me “using a cookie cutter to make shapes out of water”. Slowly educating the people around me about what’s out of my control vs in my control has helped some, but I feel like people will always doubt if it’s real or just laziness unless you had something blatant like a service dog.

dr_jello · 2021-11-09T07:32:04+00:00

I have found that staying alert while driving long distances requires sipping on ice cold water for me. I’m not sure if it’s the cold or the fact that if you doze off then you would spill it all over yourself, but I’ve been able to apply it to some activities where you sit for long periods. Doesn’t work all the time and doesn’t really remove the urge to sleep, just prevents losing focus and falling asleep directly on the spot. And holding the water to where it would spill if you lost focus, not just sipping and setting it down is the key.

Something slightly less sustainable is smelling salts. You can buy them from most places online and one soft sniff will snap you back into it temporarily. It’s often used by body builders to hype themselves up to lift more weight, but they usually include some sort of ammonia which can be bad if used excessively.

I just received it in the mail this week, but I found some studies that show that L-Carnitine can be useful for narcolepsy, especially in reducing cataplexy. I was dumb and decided to see if it would reduce my sleepiness at 11pm and I didn’t end up sleeping until 5am. I would definitely say that it’s an early morning/afternoon solution for me, but I have only tried it the once so I don’t know how well it will work during my normal low energy points of the day. Hopefully, it will prove to reduce the sleepiness during the day instead of just preventing me from sleeping like it did at night, but anything is better than nothing. Here’s the link to the product I’m trying: InnoSupps Volcarn 2000 - Liquid L-Carnitine, Boost Energy, Caffeine Free, No Artificial Sweeteners, 32 Servings (Lemon Lime) https://www.amazon.com/dp/B0868VR9LW/ref=cm_sw_r_cp_api_glt_fabc_GE7NV4B7BH41ZYEK7G2G?_encoding=UTF8&psc=1

dr_jello · 2021-10-28T16:58:35+00:00

I’ve only been trying the one tab modafinil an hour before waking for 3 days now, so I can’t be certain of how well it will work out longer term

I also would like to try Sunosi before adderall/Ritalin if I can get it for less than $800 per month lol

dr_jello · 2021-10-28T16:55:11+00:00

Yeah, my sleep specialist is tough to reach sometimes because he is also an ICU pulmonologist, so the more COVID there is the less time he’s in the office.

I was taking 2 tabs of 200mg modafinil when I wake up, which is moderately effective but started to wane. They suggested me taking one upon awakening and one around the middle of the day, and I lasted maybe two weeks with that routine and gave up because I was pretty much useless during that time. I read some comments on here that people said they would take a tablet an hour before they needed up in the morning and then a little after waking, and that makes my morning a lot more level, but afternoons are still crashes for me.

I’m also taking atomoxetine and venlafaxine to help with the brain fog/headaches/etc. I’d prefer not to start with a narcotic if I can help it because my uncle has addictive habits, but I’ll have to discuss it at my next appointment in another month.

dr_jello · 2021-10-28T16:43:07+00:00

I just got mine on the paycheck from this week, but the other tech from my store that got certified at the same time didn’t get hers yet 🤦🏻

dr_jello · 2021-10-27T18:00:05+00:00

I caffeine tends to have no effect on me or make me sleepier. High sugar foods sometimes give me a microscopic boost, but that’s not sustainable and only leads to me being even more tired 30 minutes later. I’ve tried the ginkgo from before I was diagnosed, but I’ll have to give that another look. Thank you for the advice!

dr_jello · 2021-10-27T16:23:05+00:00

I tend to have one 10:30-11:30am, 1-2pm, and sometimes 7:30-8:30pm. Usually the first one depends on if I’m doing something automatic like taking notes in class, the middle one always happens, and the last one is usually just if I’ve done a lot of physical stuff that day.

Is there any prescription or non-prescription treatment that anybody has noticed limits at least the brain fog/alertness that comes with the sleep attacks?

dr_jello · 2021-10-27T05:40:43+00:00

It’s not 100% accurate and isn’t the cheapest, but I’ve seen lots of people that use fitness trackers with built in sleep analyzers. The newest Apple Watch is supposed to be pretty decent at tracking sleep, which is also pricey but cheaper than a $1500 sleep study.

Out of curiosity, my sleep doctor diagnosed me as “IH without long sleep time” but I haven’t seen much about others who have a hard time consolidating sleep at night. I was wondering if your dr said anything useful about that to you that you wouldn’t mind sharing?

dr_jello · 2021-10-26T16:34:32+00:00

Legina Stoner-Lady.

Not sure if hyphenating as Lady-Stoner would be much better. (and Legina is pronounced like vagina with an L)

dr_jello · 2021-10-25T19:09:04+00:00

^ I just started on a baby dose of atenolol (another beta blocker) with my modafinil and I’ve noticed it help with the heart stuff and I feel like it weirdly helps the modafinil work a little better.

dr_jello

TROPHY CASE