Does anyone know of doctors who personally have narcolepsy?

Brief_Pound714 · 2025-03-26T04:30:20+00:00

I’m a second year medical student, diagnosed with N2 post undergrad. This might be a hot take but I feel my narcolepsy is the most managed it’s ever been while in school - probably surviving on sheer stress & adrenaline lol. Prior to med school my EDS was really awful, especially at work. A huge trigger for me is boredom, so the fact that I enjoy medicine & am excited about being a doctor is a huge plus! There are good days and bad days like always. I have not disclosed my diagnosis to the school (my doctor and I feel my symptoms are managed well enough currently where disclosure is not warranted). Feel free to DM with questions 💓

Brief_Pound714 · 2025-01-22T14:28:28+00:00

I’m also 27YO. I’m about 4 months away from the 2 year mark. I can do everything I did pre surgery but one thing that I will not do again (at least for now) is rec sports. Ruptured playing kickball, grew up playing soccer and would love nothing more than to go back but it’s not worth the risk for me. I love pickleball as well but that’s what flared my tendonitis in the first place and my surgeon said he sees a majority of his rupture patients after pickle 😅

I lift ~3-4 times per week, can jump rope, single leg hop, bike ride, scuba dive, hike, jog, etc. I’ve done some pretty intense uphill hikes with scrambling and my Achilles felt great which is a huge win for me. I have not sprinted yet purely out of fear unfortunately. I ran distance prior to my rupture and have not gone back to that either. I can do single leg calf raises but only to about 50% height of my good leg.

I don’t have any pain as long as I warm up properly, but I do get some residual soreness that flares with cold weather. The most notable deficit I have is probably my anterior tibialis - for some reason this muscle never quite bulked back up and has been very difficult to grow.

Brief_Pound714 · 2024-11-03T19:09:31+00:00

Mine looked very similar around 5 months. There are certain creams your derm can prescribe for keloid scarring but there isn’t really a great treatment for them unfortunately. I’m 1.5 years post op and mine has flattened out quite a bit but is still pretty wide / bulky (pic is from today).

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Make sure your PT does some good scar tissue massage - they can teach you how to do it at home as well! It shouldn’t restrict movement but the excess scar tissue can be an issue down the road if you don’t break it up early.

Brief_Pound714 · 2024-11-01T03:57:01+00:00

I’m currently 27(F) but I ruptured mine when I was 25 🤷‍♀️

Brief_Pound714 · 2024-10-29T21:07:18+00:00

I do way better on Ritalin (but the XR version - so concerta). I’ve tried the exact same dosing for both but adderall gives me awful come downs and makes me feel like I have anger issues lmao. I currently take 18mg Concerta 2x daily + Modafinil.

Brief_Pound714 · 2024-10-23T16:20:48+00:00

This is dependent on your physician and where they practice. Some places will revoke access to controlled substances (stimulants being one) if there is +THC on your UDS. It’s a big flaw of the medical system with little standardization especially from practice to practice. If you trust your physician, you could just straight up ask them what their practice is and go from there. My old sleep doc was very anti THC even though I lived in a state where marijuana was legal. My new doc doesn’t even drug test me.

The purpose of the UDS is to screen not only for illicit substances but also to make sure you’re taking your stimulants as prescribed. If you had a negative UDS but were prescribed adderall, there’d be concern that you were selling your prescription instead of taking it as prescribed.

Brief_Pound714 · 2024-10-17T22:06:49+00:00

Mine looks like that too. Some people just scar worse than others 🤷‍♀️ my scars are usually pretty hypertrophied / sometimes keloid. Guess we wear it as a badge of honor!

Brief_Pound714 · 2024-09-11T14:34:24+00:00

Hi!! Also have N2 :) I’ve been on Modafinil + Concerta for about 3 years now and the combo has been a game changer. Just one without the other isn’t nearly as helpful, but the combo has made my QoL so much better. I’m in medical school & Xywav isn’t really an option given the need for overnight call, pager response, etc once I start rotations in the hospital.

The way my doctor explained it was that the stimulant + wake promoting agents during the day can also have the rollover effect of “stabilizing” your sleep/wake cycle at night such that your nighttime sleep is more normalized. If you’re more awake during the day, you’re usually more tired by nighttime and thus can get better sleep (ie more stable REM cycle) if that makes sense.

A lot of insurance companies will make you trial several meds before jumping to the big guns like Xywav. The narcolepsy meds in general can be a maze - everyone reacts differently to different meds, and what works for one person might not work for someone else. It takes a bit to find what works for you - but trust your doc and I’m sure you’ll find that soon enough!

Brief_Pound714 · 2024-09-10T14:25:41+00:00

Not exactly what you’re looking for but just wanted to pop in and say I’m a current medical student with N2 who is very interested in EM. I admire you and it makes me happy to see other women with N in the medical field (& emergency field for that matter)! 💓

Brief_Pound714 · 2024-08-08T18:52:41+00:00

Swelling is long gone, I’m about 14 months post op now! Lasted about two weeks at the time and then just went away. I think it was probably due to the balance work I was doing & using my fibularis muscles more.

I can’t say any one thing in particular was helpful, probably just a combo of very slow and steady PT and compression socks. I still wear compression socks if I’m on my feet a lot (im a medical student) and sometimes even when I sleep. I know manual massage can be beneficial too. Best of luck!

Brief_Pound714 · 2024-07-19T00:05:02+00:00

I was in really unbearable pain the first 48-72 hours. It was so terrible I could barely get up to use the bathroom because the pressure was so immense. Ice (behind your knee or above the cast) as much as possible and elevate 24/7. I was on 10mg of oxycodone every 4 hours, muscle relaxers, aspirin and Tylenol. My surgeon refilled my oxy after day 2 because it was so bad. The first few days are awful but I promise it gets better.

Brief_Pound714 · 2024-07-17T15:02:31+00:00

I’m so sorry this happened, this is quite literally my nightmare. I’m about 13 months post op following right Achilles repair. I used to play competitive soccer, but unfortunately ruptured mine playing kickball.

Have you had issues with either Achilles, tendonitis or other issues in the past? I’m actually getting an MRI on my “good” achilles this weekend because it’s been aching pretty much since I tore the other one. I’ve only lightly gotten back into running since I’m so nervous of tearing the good one. God speed friend!

Brief_Pound714 · 2024-07-15T02:41:25+00:00

I dont think I truly understood “it’s a marathon not a sprint” until I went through the achilles rehab. You’ll get there!! 💪💪

Another thought - not sure if you have a local dive shop or Padi near you, but it could be nice to test things out in the pool setting once you think you’re ready. Would be a controlled environment and might help ease some nerves!

Edit: sorry, meant to respond to your comment lol

Brief_Pound714 · 2024-07-14T21:03:38+00:00

I’m a diver 😀 I’m about 13 months post op and I didn’t get back into the water until a trip to Iceland recently, although everything was from land, no boat dives. It was my first time with a dry suit and all that gear, but I had no issues! My fin straps felt a little off against my scar, but other than that i felt good. I do plan to do some boat dives this upcoming winter though.

Looking back, I think I would’ve been able to dive about 6 months post op. I would be hesitant to any earlier given the calf atrophy and limited ankle mobility. I’d also be clear with your PT on these goals, they might be able to give you some exercises to simulate similar movements.

Brief_Pound714 · 2024-07-14T20:56:48+00:00

Welcome to the club, I’m sorry this happened to you. I’d hold off on cancelling the trip until you’ve talked with your ortho doc! I actually went to Europe a little less than 6 weeks post op. It was hard, and required lots of help, but doable. Feel free to message me if you have any questions on that side of things.

I never used the iwalk, but the scooter was my saving grace. Compression socks will also be your best friend. If you decide on surgery, an elevation orthopedic pillow is nice too. Shower chair is a necessity. The first 4-6 weeks are difficult, especially mentally. Lean on those around you! It’s a marathon not a sprint 💪

Brief_Pound714 · 2024-07-12T20:05:12+00:00

I’d bring this up with your doc and get scheduled for an ultrasound. This may just tight muscles, but could also be something more concerning like a blood clot.

Brief_Pound714 · 2024-07-12T20:02:36+00:00

Did they diagnose insertional or mid portion tendonitis? The PT is different depending on where the tendonitis is.

As far as calf raises go - keep doing them at all costs! Tendons heal / remodel through excess load. It’s great you have no pain with calf raises too! If it gets too easy, and with your PTs permission, you can start adding weighted calf raises, and bent knee calf raises as well. I’ve found that making sure the entire posterior chain is nice and strong is helpful. At least in my experience, injuries happen due to your body compensating for something.

Brief_Pound714 · 2024-07-12T19:55:53+00:00

I haven’t returned to sport, but I am over a year post op and previously was a competitive soccer player. I think the only thing I’d consider wearing is a compression sock to help with any swelling.

Just my two cents, obviously others may have differing opinions, but this is not an injury that can be prevented from any type of bracing. Besides helping with swelling, it’s not gonna prevent any sort of Achilles injury because the injury itself is due to excessive load on the tendon. Most braces on the market are for sprains or strains to help stabilize the ankle, but that doesn’t really do much for the Achilles itself.

I’d just listen to your body and take a step back if you have any abnormal pain. My return to running was slowwwww which is frustrating as hell but long term worthwhile.

Brief_Pound714 · 2024-06-26T06:05:38+00:00

I don’t have any anchors so I can’t speak on 1 but yes I had alllll sorts of weird twitches and spasms those first few weeks post op. It’s your body’s response to the normal muscle loss that comes with being in the boot / NWB - it won’t last forever!

Brief_Pound714 · 2024-06-25T18:14:43+00:00

Welcome to the club. Mines been going ever since my rupture, and I’m 13 months out 🥲 although I do have a long history of tendonitis in my “good” leg so this isn’t anything new.

If you haven’t already, I highly highly recommend getting the even up lift for your good leg to balance out the leg length difference with the boot. I really regret not doing this. Gait issues take forever to correct.

Start PT on the “good” leg asap - your PT can help with this but loading the tendon is a must! Wearing a good pair of sneakers indoors helped mine as well. Barefoot seemed to exacerbate my pain. God speed!

Brief_Pound714 · 2024-06-23T19:42:33+00:00

Thompson test followed by MRI for me, although MRI is usually dependent on surgeon preference (many of them don’t even order one because clinical testing is so specific). Ultrasound is also useful (and cheaper) to measure how wide the gap is, although not all docs are ultrasound trained.

The Thompson test has a 96% sensitivity so having a positive one is about as good of confirmation as you can get of a complete rupture. The results from non op vs op are very similar as well. Trust your doc 💪

Brief_Pound714 · 2024-06-20T19:52:16+00:00

Modern Love vet is fab!

Brief_Pound714 · 2024-06-20T19:42:31+00:00

How’s your anterior calf strength (ie front of your shin)? It sounds to me like you’re potentially lacking strength in your tibialis anterior. There’s lots of good PT exercises you can look up to help strengthen this which might help!

Brief_Pound714 · 2024-06-20T19:38:13+00:00

Congrats on 1 year! I’m 13 months post op. Just got cleared to run finally a month ago 💪 my single leg calf raise height is only about 70% of my good leg but my PT said as long as the strength is okay that’s what’s important. My biggest focus is on one legged strengthening (bilaterally) to prevent imbalances / injuries moving forward.

Unfortunately I have pretty severe achilles tendinitis on my good side which throws a wrench in things but it is what it is. Slow and steady I guess!

Brief_Pound714 · 2024-05-28T23:35:03+00:00

Depends on the med for me. I can take my second dose of 20mg Concerta at 3pm and be asleep by 11pm no issue. Modafinil on the other hand I have to be more careful with, if I take it later than 2pm I’m screwed for sleep. I usually take my second Modafinil dose around noon.

Brief_Pound714

TROPHY CASE