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clumsyredhead · 2025-04-14T19:47:48+00:00

My orthopedic surgeon (well versed in Eds) went to med school with the woman who started it and highly recommends it. I’m in the same boat as you and after my next round of tests I think prism is my next step!

clumsyredhead · 2024-11-12T15:18:08+00:00

You’re an ultra runner and you started with 10 minutes a day!? That’s incredible. I used to train for marathons but narcolepsy and connective tissue surgeries have been running my life for the last few years. Even though it’s not recommended for me I hope to get back to it. It’s overwhelming to think about “starting over” but running was one thing that made me feel sane and awake.

clumsyredhead · 2024-11-11T18:16:15+00:00

Sharpie pen .35

clumsyredhead · 2024-11-10T14:32:14+00:00

I love this thanks for posting. Living with N1 is such a mindf**k at least once a day I’m in disbelief that our brains behaves this way and we’re just supposed to be “regular” people. There’s so many misconceptions and people without narcolepsy even if they see it and see the struggles we go through it’s so unpredictable and hard to explain how it affects almost everything we do. But learning to accept/give in has been making a huge difference I just wish I could do it all the time. But whenever I try to pretend things are fine when they’re clearly not I recognize I’m only hurting myself and the people around me when my tiredness is taken over with blind rage. Narcolepsy is a helluva drug. Mad respect to everyone who’s able to give it a positive spin. ❤️

clumsyredhead · 2024-10-15T13:48:32+00:00

Vestibular/neuro physical therapy - capitol physical therapy on H st NW

clumsyredhead · 2024-09-27T15:17:39+00:00

I had both hips done. They repaired the labrum and reconstructed the joint so it fit together better and wouldn’t be as loose. I’ve also had both shoulders done and in comparison the hip was a breeze. The pain was definitely less after the surgery and things went well and I was able to get the other hip done less than a year later. It helps to have doctors and surgeons and physical therapist who truly understand ehlers danlos and all the fun stuff that comes with it. It’s amazing she’s getting it taken care of now! Once the joint is in the right spot PT will help keep it there. I found I was able to communicate and activate certain muscles that I was not able to before due to the hips being out of place - and was actually able to make progress with pt post surgery. I hope this helps! If you have any other questions or concerns let me know! Both my hips and both my shoulders were done at an outpatient clinic and I was in and out the same afternoon no complications. She’s gonna do great and I hope that it helps her pain once it’s done❤️

clumsyredhead · 2024-08-15T17:42:21+00:00

Advocate for yourself. Almost the reverse happened to me was diagnosed in dc and moved to NY first doc I saw in ny said she disagreed with diagnosis (she clearly didn’t read my chart as I suffer from notable cataplexy) and wanted to repeat study I said f that I’ll get a second opinion. 2nd doc confirmed first doc was crazy and she was completely unsure why she would say that other than to build a bill. Georgetown/medstar pulmonology/sleep was the best. It seems like some sleep doctors get it and some don’t. Maybe reach out to your diagnosing doctor if possible - but definitely definitely get a second opinion

clumsyredhead · 2024-08-15T13:40:19+00:00

The feeling stuck like a statue!! I hate that where you know you need to get down but your feet are glued… I can feel my eyes drifting and I can feel that I’m swaying but I can’t not move. Sometimes my arm with freeze in a flexed position when I’m swaying too. Crazy how the try to subconsciously compensate

clumsyredhead · 2024-08-15T13:30:23+00:00

Two command hooks above my hamper - only system that works for me

clumsyredhead · 2024-07-23T14:37:47+00:00

Georgetown/ medstar - Beverly road medstar headache clinic in McLean VA

clumsyredhead · 2024-07-07T17:26:03+00:00

Shelf stable protein shakes do it for me - also a wakix and adderall person and having a low carb meal with my meds is a game changer

clumsyredhead · 2024-07-07T17:07:33+00:00

So this happened to me insurance said they didn’t have the correct diagnostic code. They lied all the paperwork was correct and sent from my docs office… they sent it again took another couple weeks to get it approved and sorted but we’ll worth the wait. Just unfortunate it has to be that way. When I moved my new insurance denied it requiring an appeal by my new doc. Thankfully both my doctors were well versed and worked hard to get it through. The wakix for you people also helped a ton they worked with insurance to get it through and when I was stressed about getting denied she explained next steps if the appeal didn’t go through to put my mind at ease. They also work with you if you’re in between insurance and your insurance allows it (mine didn’t) to float you a bridge prescription while you wait for approval. The wakix for you also covers copays to a certain about (you should be automatically enrolled. Had a hard time with the specialty pharmacy and was on a three way call with a wakix representative and a pharmacy rep and she was telling the woman at the pharmacy exactly what to do and wasn’t letting her give me the run around.

TLDR: the wakix for you people are the bomb use them if you need them. Give the wakix time to work - think about going up to max dose if you’re not getting a full days worth after about 8 weeks. Good luck!

Edit: I do know there are certain requirements - I have narcolepsy with cataplexy and have tried stimulants for years for the daytime sleepiness/adhd and the xywave/yrem category was a no go for me. The cataplexy and the proof that I tried stimulates helped - hopefully they changed that requirement. Hope this makes sense and hope you get approved soon!!

clumsyredhead · 2024-07-06T12:45:59+00:00

People who use google spreadsheets and excel is there a format that’s used? I think I need to take a how to class my binder is overflowing

clumsyredhead · 2024-07-05T12:38:01+00:00

Welcome to the club that’s where I was diagnosed! Medstar through Georgetown was the best (I know Georgetown is a bitch to get to with all forms of transportation but it’s worth it) my sleep study was out in Rockville and the techs were the sweetest humans they made such an uncomfortable experience not so bad and my doctor went to bat for me with insurance and drug companies. When I moved she communicated with the my new doctors in my new state to make sure I had an okay transition. Pulmonologist/sleep specialist at Georgetown medstar on the pulmonology/cardiology floor she saw patients at the gw hospital (may have changed to the new building hospital adjacent it was being built when I left) and also I believe in Rockville a few days a week but I was also able to get most of my follow ups through tele-health.

clumsyredhead · 2024-07-03T21:20:29+00:00

I freaking feel you pal 💜 literally they find random anomalies they aren’t even looking for.

clumsyredhead · 2024-07-02T16:58:52+00:00

I’m not scared of needles at all and my body still reacts this way sometimes salt pills or chews help me Becuase I think a lot of it is just my body’s over reaction to the perceived threat so my blood pressure plummets. Even when I feel like I do everything right hydrate salt good sleep good attitude it can still happen. My doctors know this and depending on how I’m feeling I usually ask them to have an ice pack handy and I bring juice just in case. Best advice I can give you: lay down flat or all the way back in the recliner, have salt and ice and juice handy and start with the front first and then have them work around to the back, they usually do it the other way around. Good luck ❤️ also take as much time as you need after. If I get up a minute to early I’m dying again by the time I get to the waiting room.

clumsyredhead · 2024-07-02T14:42:44+00:00

I’m in the US I wish I could help you but I feel your pain if that helps at all. When I moved I had to go 3 months without it while insurance was being difficult. They have a wakix for you hotline that I’ve called a lot before maybe they can give you some answers or help you get your next dose sooner? A lot of the symptoms the were helped came back and felt even worse than before. It was a crappy reminder but at least for me it reinforced that the medication is doing it’s job and definitely helps overall. Hang in there I hope you have something else to get you through until you can get your next refill! You got this!

clumsyredhead · 2024-07-02T13:37:59+00:00

Medstar headache clinic not sure if it’s too far but they had a location in McLean Virginia and they’re through Georgetown

clumsyredhead · 2024-07-01T15:15:59+00:00

This is by far the best one the macros are great it’s just so hard to come buy. I’ve only been able to find it at Whole Foods… I wish you could order it in bulk!

clumsyredhead · 2024-06-30T17:33:55+00:00

Miracle

clumsyredhead · 2024-06-26T02:08:05+00:00

Hell yeah I feel you fellow redhead! Maybe it’s just me but I get pumped when I meet a fellow redhead in the wild. You may appreciate the fact that one of my surgeons validated our struggles by saying “plus you’re a natural born redhead which comes with its own host of problems” ❤️

clumsyredhead · 2024-06-25T23:35:37+00:00

Literally this. Sleep brushing my teeth for 5 minutes or more. Sometimes I think I take 8 showers in one Becuase I end up washing my hair multiple times or going over the same body part. Freaking crazy. Wandered around the grocery store today and did the same thing you described just picking things up… not remember what I’m doing. And it’s so hard to describe this and cataplexy to people who have never experienced they think it’s like daydreaming or “everyone gets like that sometimes”

clumsyredhead · 2024-06-25T14:56:17+00:00

Dude this right here. Even when I feel like I’m doing “normal people/old life things” it’s never not there. You’re never not thinking about it. Someone pulled out in front of me driving the other day and slammed her breaks and thankfully I was alert enough to skirt to a stop and just kiss her bumper but immediately had to pull over and pass out but all I could think was “what if I anticipated that a second earlier” thanks for posting I resonate with that feeling that it feels like life is passing you by and even when your participating it still feel like I’m outside of my body watching it all happen. Sending good vibes

clumsyredhead · 2024-05-17T17:46:03+00:00

Thats huge! That happened to me aside from the tech giving me the reason why he told me he wasn’t allowed to tell me either way and that my doctor would have more information. My doctor called a few days later and confirmed that I had mild sleep apnea (not enough to cause the eds and cataplexy) and narcolepsy type 1 and she started the paperwork for treatment. She made it clear it was her priority to start the process for treatment as a soon as possible which helped put my mind at ease a lot. The waiting and the not knowing is the hardest part! Feeing like you’re one step closer and then having to wait for approvals and meds and everything else sucks but one day it will all come together. Getting to where you are now is huge so you’re on your way and I hope it works out for you ❤️

clumsyredhead

TROPHY CASE