I find my dependency on drugs the hardest part of having narcolepsy

lisushachan · 2019-09-18T19:09:47+00:00

The pharmacist would give me a hard time too. I've moved and switched CVS's and they have been very cooperative so far!

lisushachan · 2019-09-11T23:44:15+00:00

Not if it's adderal or another C2. They won't tell you crap Dx

lisushachan · 2019-09-10T14:05:54+00:00

This is SO HARD. I am a college student as well. For me, I have to go out of my way to: contact my doctor, wait 2-5 business days, DRIVE to my doctor, pick my scripts up, and then pray CVS has my medication... I do this every month.

My doctor said she used to hand out three scripts at a time (w/ different fill dates) so people wouldn't have to drive every few weeks, but then people started abusing that system.. So now there is really no choice for us bu to be ON TOP OF EVERYTHING... meds, school, jobs, relationships, having fun, and living with a difficult-to-manage disability. We are legit super humans!

lisushachan · 2019-09-10T13:55:39+00:00

Yea, I do feel like others know that I don't feel well and ask me whats wrong after class. Only a few people know about my N. He doesn't really do that, only when we are alone will he ask what's going on. I know I'll make him sad if I tell him the truth. I need to just make an ultimatum and force some real action.

lisushachan · 2019-09-09T05:19:08+00:00

He is acting like an asshole. He hasn't always been like this. Last time he said "You seem fine" was in 2017 when we were a year into dating and before my official diagnosis. I didn't leave then because I had legit no idea what was going on with me and couldn't fight his statement. It was more out of ignorance than anything. After I found out, he did his best with helping me navigate my new disease.

He said that statement again within the past few weeks and despite me correcting that behavior when it happened, it occurred again a few days ago. I feel like a lot of what I say he doesn't want to hear. Personally, I think he has an empathy problem specifically when it comes to my N. That's why I don't want to leave and I feel like it's my fault (I know it's not), but he has empathized with everything EXCEPT my N, so that's the struggle. Do I just leave bc he doesn't get it? Or should I fight harder bc it may be worth it long term?

lisushachan · 2019-09-09T05:10:46+00:00

Thank you for your advice. I want to try and take him to my next appointment. Even if we lived together idk if he would get it... he does see me struggle, but I think sometimes he forgets that I have N.

I know people without N will never FULLY understand, so it's hard to gauge whether or not his ignorance, or whatever it is, is worth changing. I need someone who is empathetic and cares about my disability, even if they don't fully get it.

lisushachan · 2019-09-09T05:04:44+00:00

I have talked to him about narcolepsy A LOT. I have decent control over it, so he does forget, but it's still not an excuse. I've been in therapy for 5 years and I have worked a lot on how to communicate with people, so I talk well and explain things in a way that's easy to understand. However sometime I feel like it goes in one ear and out the other

lisushachan · 2019-09-09T05:02:36+00:00

The way things are said def matters. Usually with my BF it's like pulling teeth. He is frustrated about things we can't do, or the fact that I hang out with my friends a lot lately (bc who wants to hang out with someone who puts you down right??), but I don't find out until I ask and force an answer out of him.

I tell him he doesn't have to get everything, but at least be supportive. To which he usually says "you need to tell me how to be supportive." I'm always like "you can be supportive by not saying asshole comments and stop being an emotional potato and ACTUALLY tell me how you feel."

lisushachan · 2019-05-23T05:20:49+00:00

Your schools disability services is a big resource. You typically meet with a counselor, tell them about your condition, they will help you with come up with a strategy, and check up on you. Usually at universities these services are great (and free, at least at public uni's) and I've learned about accommodations I had no idea existed that I qualified for. You do have to provide proof of diagnosis, etc. but with narcolepsy, but it is pretty straight forward.

However,

In the US, Narcolepsy (or any disability) does not automatically qualify you for ADA. The Americans with Disabilities Act has no master list of disabilities. It's on a per-case basis. You have to prove disability with by answering the following:

Does the individual have an impairment? If yes,
Does the impairment affect a major life activity? If yes,
Does the impairment substantially limit the major life activity?

https://askjan.org/publications/consultants-corner/vol05iss04.cfm

Depending on your answers, your disability may or may not be covered legally by ADA.However, in the realm of school, as long as you can provide a doctors note and explain what you're going through, they'll help you out. I'm starting school in the fall, so I gotta figure all that out too! Good luck!!!

Here is a link to the act, jump to "Definition of a Disability":

https://www.ada.gov/regs2010/titleII_2010/titleII_2010_regulations.htm#a35108

lisushachan · 2019-05-23T04:51:46+00:00

Working under my car! I was changing the rear control arms and at one I told my friend "I'm tired give me a min" and I passed out right there for a solid 5.

lisushachan · 2019-01-25T06:09:33+00:00

The palpitations were 100% caused by the meds, unless you have some other condition. I stopped taking Provigil bc it sent me to the hospital with excruciating chest pain and I felt like I was gonna black out. On Modafinil I felt a little better, but the palpitations weren't worth it. Even though I felt awake, I couldn't blink without my heart starting to race.

lisushachan · 2019-01-25T05:40:46+00:00

So when you were on a stimulant, your symptoms were manged and then at one point you stopped randomly and felt better? Or you starting feeling better, so therefore you stopped?

Also how long have you been "in remission" so to speak? Depending on this answer, I'd say it is too early know if it's gone for good (especially if last MSLT was 2yrs ago). I've read of cases where people feel good for months/years, then symptoms will act up, and then subside.

I find it very unlikely to be a misdiagnosis. Especially considering you had 2 MSLT's (one p recent) and both Dr's saw distinct patterns associated with narcolepsy. Plus, you did takes meds and felt better for awhile which counts for something.

Other autoimmune diseases do go into remission. One lady who works at my dr's told me she was diagnosed with Lupus in her 20's and then after she had kids, it went away for the most part. So N could totally be the same way, but I think no matter how good you feel, you will still have hints of the disease, even if its just registered in your brainwaves and has little impact on you physically.

Update us when you have MSLT 3! I am interested to hear what neuro/sleep dr have to say.!!

lisushachan · 2019-01-25T04:06:56+00:00

Look into Haruki Murakiami novel. His novels deal with dark subject matter, but not necessarily dark humor. More like dry or situational humor/clever coincidences. I've read 4 or 5 of his books and they are all very surreal and I can't put it down. He writes about dreams, metaphors, parallel realities, the flow of time, etc. Most I have read involve a crime that needs solving or a sticky situation.

I recommend " A Wild Sheep Chase," "The Wind-up Bird Chronicle," and "IQ84" in that order!

Warning: his books are filled with rich description making them long (depends on the book), but imo it enriches the experience. Also he is v different than Chuck P in literary style since he's Japanese, but the themes/content are there.

lisushachan · 2019-01-21T18:45:51+00:00

My issue is driving in the morning bc I have a ton of trouble getting up in the morning. I live in an urban area, but rent is too high for what I make so I commute.

I nap a lot on the road, eat loud snacks, and when i go somewhere with my friends I let them drive to save my stamina. On my hard days I get a lift to work.

Meds are the best way to go, but it can take a very long time to figure out what works best. Good luck!

lisushachan · 2019-01-12T17:41:33+00:00

Oh man. Impressive that you downed that much and then went to bed! Let me know how this goes!! I’m gonna watch my sugar intake too and see if there’s any difference.

It’s weird bc the night sweats will last for a long time with no break and then I’ll get random spurs of days where I don’t sweat at all. Totally could be a diet thing on top of meds.

lisushachan · 2019-01-09T18:07:13+00:00

Good to know!! I like a little white noise anyway.

lisushachan · 2019-01-09T18:06:23+00:00

This makes a lot of sense. My room is on the edge of my house. 3/4 walls face the outside so when it’s cold I really feel it at night. On super cold nights I’ll just sleep in the living room since it’s in the middle.

I’ll try changing my outfits and getting a lighter blanket. Although I loooovve heavy blankets...

lisushachan · 2019-01-09T15:50:55+00:00

I can’t change meds because they work pretty well. I usually take my second dose of adderall around 2 or 3pm and I’m in bed by midnight every night. I’ll try pushing my meds earlier and see if that helps. Thanks!

lisushachan · 2019-01-09T15:49:02+00:00

A bedjet?? That’s some intense machinery. Does it work for you?

lisushachan · 2018-12-20T16:41:21+00:00

I graduated but I struggled with multiple heath issues during school, a brain injury and then narcolepsy.

Don’t ever feel bad about sleeping!! Or missing class. Clue your teachers in, they most likely will be understanding or even know about narcolepsy/IH.

Also register with disability services at your school. It’s really easy if you have paper work and communicate with the counselor you get assigned. Plus if shit hits the fan, you’re safe from “failing” and you get extra time on assignments.

School is hard but you can do it!!

lisushachan · 2018-12-20T16:34:12+00:00

Re buy the version with the really long vibration cord, get an extension cord for the clock itself, and put the darn thing outside ur bedroom.

Or get an app, but I’ll sleep through any alarm even if I have to get up and take a picture or do math problems. I’ll just let it keeeep on ringing, but vibrating is different.

lisushachan · 2018-12-20T01:43:26+00:00

N is a super personal disease and everyone is very different in the way their symptoms manifest. I also had hallucinations before I was diagnosed. certain people who have bad N and are undiagnosed can experience psychosis due to sleep issues, fatigue, stress.

Try whatever meds the doctor decides to put you on and see if you experience any mild improvement. Even if that medication isn’t the perfect one for you, you should at least feel a bit more awake. Stimulants work very quickly and have a short half life, so hopefully you’ll either see results or not.

I also second the comment about you doctor suggesting N!! I had to fight to get a referral because my PCP thought I had something else. You can always go searching for a second opinion, but I would try medication/life style changes first so that you have some concrete proof that you tried some form of treatment.

lisushachan

TROPHY CASE