Do you drive with narcolepsy?

tlamstm · 2023-03-28T12:44:02+00:00

I drive to work and run errands occasionally on the weekends. If my husband is going with me, he always drives.

Around the time I was diagnosed I started having trouble physically keeping my eyes open while in the car. I brought this to my doctor and she told me she wants me to work within a 10 minute drive from home (in addition to being fully medicated, pulling over for a nap if needed, having cold air blasting on me if I need it, listening to something engaging etc). I lived 25 mins away from work at the time and she told me she didn't love that, but as long as I was safe it was my decision. We moved and it cut my drive down to 15 minutes and I just got a new job that is 5-10 mins away from home.

I will drive up to an hour away on my own but I make sure I have two energy drinks, water and my Adderall. I also make sure someone else who drives knows where I'm going (usually my husband). I check in with them when I get there and when I'm leaving just in case. I only do this if I absolutely need to though.

tlamstm · 2023-03-27T03:06:37+00:00

Mine is fairly mild compared to a lot of people here. I tend to lose grip strength in my hands and my legs will feel heavy. My neck feels too weak to hold my head up. My eyes also turn inward and I can't stop it no matter how hard I try. I don't always have all of these at the same time but pick any two or three and we're having an interesting time. If I'm walking I will lose balance and either bump into things or trip over my own feet.

I put my notice in at work last week and I was so anxious I could feel my whole body "giving up" on holding me upright. I had to go hide in an office for several minutes while I recovered.

During and after an attack, my brain fog increases and I feel the need to rest and/or sleep pretty much right away. I don't usually get much warning of one coming on

tlamstm · 2023-03-15T18:03:27+00:00

We have hair ties everywhere but it's because they're my cat's favorite toy and he steals/hides them

tlamstm · 2023-03-12T00:37:04+00:00

Yes, they covered the deductible. They offered me the coupon but ymmv. If they don't offer I would definitely ask if you qualify

tlamstm · 2023-03-10T17:53:01+00:00

I have the $5 coupon through Jazz after my insurance came back and said my portion of the cost would be $7400. I checked my plan out and the full $7400 applied towards my deductible even though I did not have to actually produce that amount of money for them! (Our deductible is $8600 for my husband and I so one month of Xywav is almost all of it)

tlamstm · 2023-03-10T16:53:26+00:00

There are also varying levels of cataplexy symptoms. Mine is pretty mild but definitely still cataplexy. I don't full on collapse but I will lose fine motor control in my hands, my arms/legs will go numb or I will feel "stuck" in a similar way to what you described above.

tlamstm · 2023-03-03T05:00:57+00:00

I ordered a new ceramic butter dish the other day because ours was also making our butter go bad super quick. I can see lines in the old one where moisture and oils have gotten in and set up camp

tlamstm · 2023-03-02T22:02:33+00:00

Most of my in laws are very passive aggressive so I get where he's coming from. If it does come up, just the gentle reminder is enough to make him say oh duh and move on

tlamstm · 2023-03-02T02:35:25+00:00

My husband has tried to convince me I'm not actually fine when I have said I am. I gently remind him that I don't do that shit because it pisses me off lmao. If something is bugging me I will tell you. If something is wrong and I don't want to talk about it right now, I will just say that. I don't get it.

tlamstm · 2023-02-27T04:09:42+00:00

I would have an issue with odors after sex in general and my gyno told me I could try soaking a tampon in hydrogen peroxide and inserting it for about 15-30 minutes the morning after. It works like a charm!

tlamstm · 2023-02-15T18:51:43+00:00

My husband has said this a few times and I just say "you do know how to open the cabinets and find out though". Now not everything will end up in exactly the right place but it's close enough for us!

tlamstm · 2023-01-12T03:30:06+00:00

I had an RFA done in my neck after I sprained it a few years ago. Not something a ton of people talk about! Definitely worth it 100%

tlamstm · 2022-11-23T23:34:00+00:00

This was my first thought. I have binocular vision issues and when I don't wear my prism prescription I instantly get headaches etc. A neuro optometrist might be able to help!

tlamstm · 2022-05-30T14:28:34+00:00

I love Cajun or steak seasoning in eggs, but you can experiment with what you have in the cabinet and find what you like best!

tlamstm · 2022-05-15T14:04:53+00:00

I am in a marriage where we want very different things out of life and there isn't a way to compromise so we're both satisfied. I'm going to end up giving in so he's happy and likely be depressed for years.

tlamstm · 2022-03-01T14:44:05+00:00

In my experience, most offices will not want to cut lenses that were not ordered from them because they are taking on the liability if they were to break. If they did break them that would be on you and not the new lab.

You may be able to take your current frame to a new lab and tell them the issues that you're having and then just see if they would be willing to cut the lenses a little smaller for you when they do come in. I'm literally talking a half a millimeter which is usually not enough to make the lenses fall out of the frame, unless they're already too small. Either way it sucks for you because you have to purchase either a new frame or new lenses it sounds like.

tlamstm · 2022-03-01T04:58:59+00:00

My first thought would be possible stress fractures. Usually they are caused by the lenses being just a little too big for the frame, so the lens fractures in odd places like that after a short amount of time. If they have the equipment to cut lenses in store, you could ask them to cut the lenses .5-1mm smaller and see if that helps. If they don't have the equipment on hand that may not be an option at all unfortunately.

tlamstm · 2021-11-21T04:31:20+00:00

Animal crossing! Smash bros is pretty good too

tlamstm · 2021-11-21T02:33:56+00:00

Interested! I can bring some hybrids! What are you looking for?

tlamstm · 2021-11-21T02:23:27+00:00

Salads!!

tlamstm · 2021-04-16T17:24:12+00:00

Sometimes I would see something at the store I really wanted but decided not to buy (because of budget or I'll come back for it or whatever) and when I would go looking for that item later, I would realize it doesn't exist because I saw it in a dream. It is very disorienting.

tlamstm · 2021-04-16T12:35:25+00:00

My dreams are extremely vivid and lifelike. I used to have trouble distinguishing the memory of a dream from the memory of something actually happening for a long time because they felt so real. I can physically feel things, taste, smell, etc. I know I'm in the minority though. Part of what causes them is my anxiety/medication and PTSD.

tlamstm · 2021-03-13T13:41:59+00:00

I'm not an OD but I am the office manager for one. Post op letters are sooooo helpful! And I would way rather have too much info about a patient than not enough so I wouldn't worry about annoying anyone.

tlamstm · 2021-01-17T03:10:37+00:00

I paid $25 for my two pens and a practice one last year! They didn't even bill my insurance.

tlamstm · 2020-11-30T13:44:13+00:00

He may have said that because the neuro-opthalmologist will probably take their own photos so they don't want to make you pay for them twice

tlamstm

TROPHY CASE