I found the lump 3 days after my 40th birthday and have 2 very young kids who need their mama present and awake.
Anyone with experience with chemo, radiation, etc while navigating N?

I have Triple positive IDC breast cancer with lymph involvement, waiting on tests to determine staging and rule out metastasis. They saw a spot on my spine during an MRI that is suspicious for bone involvement. It’s looking like I’ll need the trifecta - slash, burn, and poison.

I take Dextroamphetamine and Xyrem for narcolepsy. Many of the hormone blockers also block Dextroamphetamine, and I’m sure Xyrem will have all sorts of contraindications. How am I supposed to make it to chemo if my narcolepsy isn’t well controlled?

Any advice appreciated. I’m in cancer hell, and nobody is acknowledging my narcolepsy as a comorbidity that needs consideration.

Venlafaxine has worked in stopping me from feeling cataplexy, but I've always seen it as more of a dam holding it all back. The one time I ran out of the medication I was in an absolute state constantly crying until I got my next dose and the crying stopped.

Not being able to cry without an almost paralysing wave of cataplexy from withdrawal is really starting to concern me. I've seen my own mother have a full mental breakdown to the point of spitting food and water at me, several funerals for very close family members and a number of other things I hope are the hardest things I'll have to face and I've not been able to cry. I get to the very edge of being able to form a tear and my body just refuses.

To lighten the mood slightly of this post think of it like the worst form of edging with absolutely no pay off.

I want to know if anybody has had the same reaction, and if they've been able to treat it. Any other advice around this would also be greatly appreciated.

Hi all, I am month 3 of 9g sodium oxybate. I am feeling much more awake, but also struggling in a huge way.

Sometimes when I wake up, while I can't fall back to sleep, my brain remains foggy. I can't make decisions or think clearly. I've returned to work but can't think ahead or remember things and my colleagues always need to be telling me what to do where I previously used to be brilliant and seeing the big picture and keeping things moving.

I do also have ADHD, and am also taking dexamphetamines and modafanil, but I just feel dumber. I get insane task paralysis or am struggling with pretty bad executive dysfunction. I cannot get stuff done at home even when I desperately want to, I just can't start. I am getting pretty anxious because of the above problems. I feel like I'm creating more work for colleagues or my husband than offering any support....

Is this related to sodium oxybate? If it is, will it/can it improve?

It was in July when I got to know thst i have Narcolepsey t1. I am 26 years old. It took me six years to figure out what i have. I did not know anything about Narcolepsey before I was diagnosed. I have been taking medicines but it's not working. I use a CPAP machine to sleep that my doctor suggested but still I have disrupted night sleep. I have been having really really bad headaches. I can't travel, my social is disrupted and technically I can't do anything except sleep and that is also disrupted. But now even though I am just at home and not using the screen, the headaches are still not going and I feel really helpless. Have been questioning my existence to live like this. Idk if others are also going through. I just can't help it!

Does anyone know if its ok to add a small squirt of Crystal Light water flavoring (I added a pic of the one I have) to Xywav before taking it to help with the taste? I have seen mixed info online about whether it is ok or not. Thanks!

I have been taking modafinil for about 2 months and my Dr did not inform me that it reduces the effectiveness of birth control (I have Nexplanon). I just found this out from a friend, and when I asked my Dr they said Nexplanon is still pretty good but to use a backup like condoms. Well I have been having unprotected sex this entire time and now am concerned for my risk of pregnancy. I had a negative test last week and got my period after, but recently had unprotected sex again. I am having a hard time finding information on how MUCH it reduces the effectiveness of Nexplanon. What is my realistic risk? I took a Plan B today but I know it can reduce its effectiveness too. What should I do?

I fall asleep on the couch at 4:30 PM. It's been a flare day and I've already slept for twelve hours. I pass out quickly.

I wake up in my living room. Oh wait that's not my living room and I'm not awake.

I need to be at work in five minutes. I wake up and start getting ready. Oh wait it's a Saturday and also I'm not awake.

My sister is visiting. She announces she's getting married the next day. They rented a private box at a baseball game for $50000 for the wedding. She says this is a great deal. I meet her fiance; he is made of blood.

I wake up in my living room. Someone's jiggling the handle on my front door. Oh wait this still isn't my living room and I'm still not awake.

Now I'm getting married the next day. I don't really want to but since my sister did I might as well. I'm in my childhood bedroom pondering why I'm doing this.

I wake up in my living room. I look around and think okay good I'm actually awake this time. Oh wait no I'm not, this isn't what my house looks like.

I wake up to the sound of rain outside. I look out and see that my landlord has installed a device that jets water off of a tree branch and lands on a sensor attached to the house. I wonder what this means.

I wake up in my living room. Someone is calling my name, they need me to be awake. Oh wait, I live alone and I'm still not awake.

My boyfriend comes over. He is 30 feet tall and made of various colors of blue ribbon. I slide around on the ribbons in a very Studio Ghibli-esque montage. He says he doesn't want to marry me.

I wake up in my living room. Oh I actually am awake this time. I look at my dog sleeping on her pillow.

I wake up in my living room again. Nope, this one is made of goo.

I wake up to my alarm. I ponder for several minutes if I'm actually awake. I poke everything around me several times, including myself. I am actually awake and I can tell because of how badly I want to go back to sleep.

I got my wisdom teeth out last week and took about 4 full days totally off my Adderall and sunosi so I could just sleep as much as I needed when I needed.

I normally take 100mg/ day in total and sunosi 150mg and BARELY make it through the day most days. Have to take multiple naps. Feel like I am only mentally awake for about 45 minutes total for the day, apart from driving (usually a minimum of 2 hours of my day is driving. If I have errands to run its another 2. Driving takes all of my thinking and attention capacity for the day honestly.)

I also had a TBI 10 years and one year ago and lately I have been feeling like...can brain damage from a TBI get worse as time goes on because I can not think. I can read or comprehend. I just felt like a total space cadet constantly. I am disabled but I am usually able to at least do my basic life things like order groceries and get dressed but some days i am so forgetful and it takes so much effort to figure out what even needs to be done or I start and stop due to falling asleep and lose track of everything and it has been causing me to feel depressed and worthless. And hopeless as well.

The last few days though, I feel like MYSELF again and the more I recover from the surgery and a really weird allergic reaction to a steriod...I am realizing that most of my symptoms etc have been due to tolerance.

Today I was awake. I was able to have conversations without "um...what?" To the point where someone just...stops trying to talk to me. I had the energy to form sentences and express myself etc etc and it was so fucking nice.

I have been on Adderall for 20 years now and for the first 15 years I would take tolerance breaks usually at least one day zero meds a week. (This day was my blob day. I slept at least 20 hours and had zero ability to do anything but eat pre prepared food and possibly watch a little stand up comedy and brush my teeth. ) now I am a single mom so I take it every day because I have no other choice. I havent even had to take my full dose one day this week. I assumed within a day or 2 my tolerance would be back because thats how it's gone in the past if I had had a one off day without it due to shortages or something.

It has been so fucking wonderful to keep up with my kid (not necessarily physical energy wise) but be able to pay attention to her pretend play or long winded questions etc.) Even the COMPREHENSION of words and my access to vocabulary has been like what it was in my 20s. And it has been so good. But it also makes me so sad in so many ways because...how can I possibly have more tolerance breaks worked into my medication routine when I require medication to function?

It made me wonder for the people who rotate between stimulants periodically...how do you do it legally and without breaking the rules for controlled substances? Like does taking Ritalin for a month then swapping to Adderall then modafinil the next etc work or does it seem to leave you more unbalanced and forgetful due to brain adjusting to new medication on repeat? have asked my prescriber about switching to see if a rotation would help me maintain more symptom management without needing to drink a shit ton of coffee on top of my meds. If one medication is preferred over another due to no side effects does it still need to be taken for several months in order for a prescriber to feel comfortable or...how does it work for you?

For now I am on baclofen for sleep but eventually I do hope to trial xywav.

Thank you everyone in advance

I am so tired of being tired. I just want to feel normal again. I go to the store, and after I get home, I feel like I need a nap. If I say I am tired, everyone around me says You're always tired. My boyfriend just said, "You just got up a couple hours ago and haven't done anything to be tired." I wish they really knew how it feels.

I'm working, studying, and managing my narcolepsy, but I'm still constantly tired. I'm outgoing and love being active, but my energy doesn't match my personality. I have a couple of friends but not to many as I get exhausted from maintaining friendships too.

The guy I was dating for the past year didn't want to settle with me because of my narcolepsy. But yeah I was good enough for a “commited situationship”

Since then, I've been scared of dating and knowing when to disclose it, especially since I also have chronic pain.

But finding someone compatible takes so much time and energy that I barely have. And when I explain that I have narcolepsy most people do not really understand what it feels like or that I have less time because of it.

For those in relationships, where did you meet your person? And do you have any advice on when and how to disclose your condition?

A week ago I fell asleep while sitting on the couch. I fell forward and hit my head on the coffee table and then slammed it on the floor. Ambulance was called and I was diagnosed with a concussion at the ER. Has anyone else experienced this? What did you do to mitigate concussion symptoms?

I’m 20 now but I believe my onset was around 10 years ago since that’s roughly when the cataplexy started.

I only did my sleep study in may, and after that I started experiencing strange flare ups of hypersomnia where I’ll wake up tired and nap a bunch. I used to sleep roughly 5 hours a night for years and I functioned fine. I’d usually wake up naturally by 8am. During flare up periods, I can sleep for 12+ hours and still feel tired until I take adderall. I truly have to force myself out of bed if I only get 8 hours of sleep and have work or Pilates in the morning.

I’ve been having sleep attacks for years, but those were almost always triggered by things like lectures. I used to rarely nap for most of my life. When people talk abt being tired all the time on this sub, I don’t relate at all as I spent most of my life being pretty normal tiredness wise except for the sleep attacks and the “flare ups” which have only been happening on and off for the past couple of months.

Is this a normal part of growing up with narcolepsy?

So I’ve been recently diagnosed with Narcolepsy Type 1, i don’t know if any other women experience this but when i get close to having my monthly cycle or I just started it my symptoms worsen and not because i’m cramping or I am in pain because I can get through that. I just generally feel so much more exhausted and can’t concentrate on anything. Usually my partner will have to drive me to work or school during this time because im just too tired and can’t focus on the road. Do any other women feel this way? if so what’s something that helps you during this time if anything at all?

I’m sorry, but I’m so sick of the DEA’s bullshit. Yes, there are some drugs out there that are legitimately addictive and can mess up someone’s life. However, I FIRMLY believe that the DEA’s regulations on meds used for LIFELONG conditions (like narcolepsy) are unnecessary, inherently ableist, and make zero sense.

For context, I’m officially diagnosed narcolepsy type 1. I’m currently prescribed Concerta, Wakix, and Sunosi to take every day, as well as Ritalin IR up to 2x per day as-needed for breakthrough sleep attacks. Still dealing with EDS, but I’m very hopeful that Orzeyful may help, once it’s available. My insurance gave me so much pushback on oxybates that I’m treating them as absolute last-resort. 3 months of arguing with them about prior authorization, just for them to not budge. Ugh.

Anyways, I’ve been on methylphenidate for my narcolepsy for well over a year now. I have only ever taken it as prescribed. Out of all the meds I’ve tried, it’s made the biggest difference so far. I need it to function, and cannot go without it. According to the DEA, methylphenidate is schedule II. That’s the most restrictive category a drug can be in while still having a valid medical use. The same category as fentanyl, oxycodone, hydromorphone, and cocaine. Yeah, stimulants can be habit-forming and can be abused. That being said, call me crazy but I don’t think my fucking Ritalin has anywhere near the abuse potential of fentanyl or cocaine. Schedule II seems ridiculously restrictive for a drug that many of us need to take daily just to function. Especially considering there are countless people who have taken schedule II stimulants (methylphenidate, amphetamine, dextroamphetamine, etc.) every day for DECADES for conditions like ADHD or narcolepsy, and never once abused their medication.

And also, there are a whole lot of drugs that are in less restrictive categories than Ritalin, Adderall, Vyvanse, etc. that are objectively WAY more dangerous. Xanax, Klonopin, Ativan, Valium, and practically all the other drugs in the benzodiazepine class are classified as schedule IV by the DEA. “Less dangerous” than schedule II, according to them. However, benzodiazepines are one of the only classes of drugs where the WITHDRAWAL can be fatal. Stopping a benzodiazepine cold-turkey can seizures, psychosis, confusion, complete insomnia, panic attacks, heart palpitations, or even put someone into status epilepticus. Status epilepticus is a seizure that lasts SO long that it can cause permanent brain damage, coma, or death. But those drugs aren’t subject to the same limits that meds like Ritalin have. Legally, your doctor would be perfectly fine to write you a 90-day supply prescription of Valium with 3 refills on it. Meanwhile, I can only fill a maximum of a 30-day supply of my Concerta at a time, and my prescription can’t have refills. I need to message my neurologist every time I run out so he can call in a whole new prescription. Like, take ONE glance at one of the subreddits for recovering benzodiazepine addicts, and you will see horror stories from people recounting how they woke up covered in their own shit and vomit because they had a seizure in their sleep while going thru withdrawals. Yeah DEA, that TOTALLY seems safer than Ritalin or Adderall.

Speaking of benzodiazepines, you know what other drugs are schedule IV? Modafinil, armodafinil, and Sunosi. I don’t know about y’all, but I don’t think I have EVER heard of someone becoming addicted to ANY of those medications. Hell, I’ve barely heard of them being abused. The most misuse that modafinil/armodafinil seem to get is from dumbfucks who think it’ll make them super geniuses, or stupid college kids trying to cram for finals. In what world is that the same level of danger as a drug where the withdrawal alone can kill you??

Also, I don’t think it would even be POSSIBLE to fake your way to a narcolepsy diagnosis just to get drugs. The MSLT is an objective test. You can’t just “pretend to sleep” and magically get a narcolepsy diagnosis. Hell, you’re way more likely to get a false negative on the MSLT than a false positive. However, even though narcolepsy patients have a condition that is practically impossible to fake, we’re STILL subject to 30-day prescription quantity limits and all the other DEA fuckery??? Why?? Many of us need to be on stimulants on a daily basis long-term just to live a somewhat normal life, but we have to jump through SO many hoops to get our damn meds.

The thing that spurred on this whole rant is the current Orzeyful situation. I followed the news reports on the clinical trials when it was in development, and I’ve skimmed over the whitepapers on its clinical trial results. It looks SO promising. It’s FDA-approved, but the DEA decided to step in and say they wanted to schedule it before allowing it on the market. Maybe I just missed something when looking at the whitepapers, but I don’t think I saw ANYTHING mentioned in the clinical trials about a drug-liking response, withdrawal symptoms, euphoria, cravings, or anything else that would suggest it is abusable. But the DEA is apparently SO concerned about the abuse potential of this medication that they deemed it appropriate to delay treatment availability by MONTHS for the countless Americans living with narcolepsy so they could make a scheduling determination.

I’m just sick of this shit. The DEA’s decisions make no sense, and a lot of their restrictions make daily life objectively harder for disabled people. I’m over it.

I know we don’t have a monopoly on being tired, but whenever someone says they are super tired it makes me wonder—

Do yall think that someone without narcolepsy could ever feel as sleepy as we do? Or is it a unique kind of experience?

I (25F) see an APRN for my treatment but I was required to see a neurologist yesterday. He was absolutely terrible and spent and hour gaslighting me and making me feel crazy.

He started by telling me he reviewed my chart and isn’t confident in my diagnosis because I take Vyvanse for ADHD and Prozac for anxiety. He said he thinks my MSLT was invalid because of this. I went on to explain that I had stopped taking those medications for 3 months prior to the test like I was told to do and he just brushed that off and said he still wasn’t sure.

He then went on to say that he thinks my excessive daytime sleepiness is actually just a side effect of my Prozac and Vyvanse and that it just resembles narcolepsy. I tried to explain multiple times that I have only been taking Vyvanse and Prozac for about 5 years now, but have had my narcolepsy symptoms for well over 10 years now. Once again he completely disregarded that.

He then went on to say that I was going to cause problems for my health in the long run if I keep taking stimulants and an SSRI and that those should never be long term treatments. I wanted to scream because what will actually cause problems for me is having untreated ADHD and anxiety.

another crazy thing he said is that SSRIs are not meant for treating anxiety and that I need to talk to my doctor about that.

I also told him that I’ve had panic attacks since I was a kid , especially about going to school and I kid you not he said “Did you go to a bad school? Did you have a bad family? That just doesn’t make any sense”

Despite me telling him about my sleep attacks, sleep hallucinations, vivid dreaming every time I sleep, cataplexy, ability to fall asleep in under 5 minutes no matter what, and every other symptom I have he just kept saying that those are all just symptoms of my anxiety and the medications I’m taking.

He’s made me doubt everything and I just feel awful. This diagnosis was such an important answer for me, and the treatment has changed my life. Now I just feel like an imposter. Luckily he can’t change my diagnosis or medication, I just was required to meet with him to hear his thoughts and advice. He just made me feel ashamed of myself.

Sorry if this isn’t super well written, I’m just so upset and needed to get it out. I hate being a woman and being told that anxiety is the actually reason for everything.

Just curious if anyone takes antianxiety meds? It seems like it would work against the meds for Narcolepsy?

i think i’ve built a tolerance to lumryz 9mg 😭 it genuinely takes me hours to fall asleep and i don’t even feel the affects of it as strong anymore and ive only been on 9mg for like 6 months like i wait 2-3 hours after eating to take it and then i take it and wait another 2-4 hours for it to actually kick in like idk what to do about that or if there’s anything that can be done, has anyone else built a tolerance to the highest dose of their sodium oxybate?

I take 9g xywav, 250 armodafinil, and 400 modafinil daily. It definitely helps but I'm falling asleep multiple times a day still. These are the max doses. I've also taken sunosi.

Has anyone else had this issue and taken a different or stronger stimulant and found success?

I am considering going on Sodium Oxybates, but my sleep architecture on my PSG showed that I had normal amounts of deep and rem sleep, albeit with many micro-arousals.

Does this mean that sodium Oxybates wouldn’t help me with my NT2?

If orexin is the suspected cause of narcolepsy why wouldn’t the medication also work for sleep? Thanks for any insights.

Finally got back on medication after two years. I thought it would have a huge impact on my daily life and that it’d be like a full 180, but I’m still struggling. There’s been some improvement with the frequency of cataplexy attacks, and I do feel less exhausted, but I never quite feel awake. I don’t experience crashes anymore, but I do need naps regardless if I’m medicated or not.

It makes me worried because I thought the only thing holding me back from working a full-time job was just the lack of being medicated, but now I just don’t know if I’m capable of it in general. I’m in my early 20s and don’t have family I can rely on for aid. I’ve been couch-surfing for a few months and have struggled to find adequate employment. In a situation like this without familial support to lean on, I wonder if I’m ever going to hit those important adult milestones and start experiencing a higher quality of life.

Does anyone have any advice on how to navigate this? I really need some guidance. I’ve been getting really burnt out and exhausted.

Just took the MSLT test after waiting WAY TOO LONG to get tested...

I'm scared of what the results will say... I don't think I have narcolepsy tbh (it was hard to fall asleep during the test even though I was exhausted as hell and yawning the whole time) but the sleepiness is completely debilitating and the test feels like a last hope.

Yes I'm not passing out necessarily or completely dosing off, but it's no fun to try to work when you're struggling to keep alert or not just lie down :/ Walking anywhere I just feel like I want to go lie down on the concrete and give up, and I'm just spending my time trying to focus on my breathing to keep alert. Sometimes I'm so tired I want to puke. I always get a comment from professors on why I look so tired (yawning during class while trying to . Without a diagnosis it just feels like I'm a failure or I'm just lazy. I can't do what I want to do, or maybe more importantly I'm too tired to figure out what I want to do. If I don't get a result I don't even know what I'm supposed to do next.

I just want some support and to vent since I don't really know anyone to really understand this, and I assume people here have felt the same before. I think my mom had the same issues starting from when she was a young adult (she said she had to drink espresso to not pass out, and had to cheat through college) but I can't talk to her about it...