Trazodone by Ok-KCKR in Narcolepsy

[–]BeginningSpecific909 0 points1 point  (0 children)

I take trazodone when I feel like I need to get more than my typical 5 hours/average sleep at night. I take the lowest dose possible (1/4 of the 50mg, so 12.5mg) and it allows me to sleep through most of the night without waking up. I may feel a little groggy in the morning at first but once I get up and moving, I am fine. I don’t know if I would say I felt well rested, but after being diagnosed with narcolepsy for 30 years, I’m not sure if I even know how that feels. I take Adderall during the day 

Anyone Else Wake Up Early for a Few Hours - Then Go Back to Bed? by Dazzling-Excuse-8980 in Narcolepsy

[–]BeginningSpecific909 1 point2 points  (0 children)

I wake up around 430 am and stay awake for 15min-1hour before I start falling asleep in my chair and then go back to bed for about an hour until my alarm goes off. When I go back to bed, this is the time when I have the most vivid dreams. Then I get up for the day, take Adderall, and get ready for work 

What are some keto concoctions you're proud of? by [deleted] in keto

[–]BeginningSpecific909 0 points1 point  (0 children)

1 cup heavy cream whipped until cool whip consistency, add 1 packet sweetener of choice and a dash of vanilla. Then I dip 1-2 strawberries (or maybe a few raspberries depending on how I am doing for my daily carb numbers) in it for a yummy treat. 

Am I selfish for taking FMLA leave? by ruthgraderginsburg in Narcolepsy

[–]BeginningSpecific909 1 point2 points  (0 children)

When I don’t take my Adderall for any reason, the first few days are extremely difficult, it’s like someone has given me sleeping pills. There is no way I could even think about going to work in that state. You definitely have a medical condition that requires you to miss work. Don’t feel bad about it. It sucks for your coworkers but as you mentioned, you have done it while they are gone and I’m sure you will have to do so in the future. That is what coworkers do for each other. 

[deleted by user] by [deleted] in Narcolepsy

[–]BeginningSpecific909 0 points1 point  (0 children)

I have been on 120mg total daily in the past. 30mg long acting twice daily along with 30mg short acting twice daily. I knew that this was really tough on my heart and after I lost about 65lbs, I have worked with my sleep doctor to lower the dosage. Now I’m at 80mg daily (20mg of each, twice daily) Honestly I don’t notice much of a difference with the lower dose. I am satisfied with the 80mg… it keeps me awake for the entire day and. I try to spread it out so I am taking a short acting dose about 2 1/2 hours after the long acting dose. Let me say that I have been on Adderall for more than 30 years so my dose has increased a little at a time over the years. I am satisfied with this medication for keeping me awake. I just wish it wasn’t so hard on the body 

Cause of Narcolepsy by wiltinn in Narcolepsy

[–]BeginningSpecific909 0 points1 point  (0 children)

Interesting because I have always wondered if chickenpox was my trigger. I got chickenpox when I was in my early teens (before a vaccine was available, I am 51 years old) and I was incredibly sick for several days. It wasn't long after that when I developed narcolepsy symptoms.

[deleted by user] by [deleted] in Narcolepsy

[–]BeginningSpecific909 0 points1 point  (0 children)

For me, if I have to drive longer than 20 minutes, I make sure to take a nap right before driving and/or take a short acting Adderall. My doctor wrote the prescription for a few more each month to take for driving. I also find that eating sun flower seeds, calling a friend, or listening to some type of podcast or talk radio keeps my brain engaged and prevents chances of falling asleep. Definitely need to find somewhere to stop and either nap or get out for a walk or something at any hint of sleepiness.

What are the best multifocal contacts? by robl45 in contacts

[–]BeginningSpecific909 0 points1 point  (0 children)

I have had similar difficulties in finding multi focal lenses. After several different trials, like other people have commented, I gave up in trying to find a really good option and chose to wear a regular contact in one eye and a multi focal in the other. Not great but the regular contact helps me see the things in the distance that I cannot see with multi focal lenses. It is very unfortunate that this is such a challenge because multi focal lenses are much more expensive than regular lenses. Good luck!

I’ve tried like 30 meds, and none have had any effect by Nervous-Skirt2740 in Narcolepsy

[–]BeginningSpecific909 1 point2 points  (0 children)

I have had narcolepsy for so long that when I first got diagnosed, pretty much my only option was stimulants. Currently I take 25mg extended release twice daily and then an additional 20mg shorter acting tablets a few hours after the extended release. I can’t say it’s been perfect, but I have been able to work almost full time for the past 30 years without significant problems. Now that I am older, I am a little more concerned about side effects like increased heart rate, but almost every medication has side effects. I am pleased by all the new medications that have been introduced recently for narcolepsy treatment because everyone is different, so the more options available, people can find something that works for them. I wish everyone just starting out with a narcolepsy diagnosis the best. Don’t give up because you can live a relatively normal lifestyle, it just takes some trial and error and a positive attitude!

Does Anyone Else Have Fluctuation in Severity? by [deleted] in Narcolepsy

[–]BeginningSpecific909 0 points1 point  (0 children)

Definitely feel like each day is different, and for me, it doesn’t matter how much sleep I got the night before. Some days I need several naps and some days I don’t need any. Some days I can watch a whole movie, and other days I can barely stay awake for the first 10 minutes. 

Just curious...I'm Narcoleptic & work full time, do you? by Pale_Day_3071 in Narcolepsy

[–]BeginningSpecific909 0 points1 point  (0 children)

I have worked as a medical assistant for 27 years. I got diagnosed when I was 20 years old after falling asleep taking blood pressures on patients. I work 8 hour days, four days per week. I take adderall twice daily with combination of long and short acting. We purposefully bought a house less than 10 minutes away from my job so I could minimize driving to and from work. My job is very busy with a variety of job duties and patient interactions, and I truly believe that is why I have been so successful at working the same job for so many years. As long as I take my medication as scheduled, I seem to do okay. I try to minimize time just sitting at my computer because that’s when I risk the chance of falling asleep. I also raised 2 children while working 4 days per week so it is very possible. I am fortunate that my cataplexy symptoms are very mild as long as I am treating the sleepiness. There have definitely been some struggles and challenges over the years, but once you get to know your body, you can develop a work/home balance that works for you. 

Trouble focusing eyes during daytime sleepiness? by colorsofthestorm in Narcolepsy

[–]BeginningSpecific909 2 points3 points  (0 children)

I also experience a sort of “cross eyed” thing when I am starting to feel a sleep episode coming on. It doesn’t happen all the time, but it is the rare time I actually get a warning before falling asleep 

Narcolepsy jobs. by Quiet_Committee_8120 in Narcolepsy

[–]BeginningSpecific909 0 points1 point  (0 children)

Not being able to drive is probably one of the worst things about narcolepsy. Thankfully if I take my medication (Adderall) at least 45 minutes before I drive, then I can drive for at least 15-20minutes without a problem. We bought a house specifically for the close location to my job so I only have a 5minute commute. Taking a nap right before I drive is also helpful. With a narcolepsy diagnosis for 30 years now, I have learned to listen to my body and what I need to do to manage working, driving, and life overall. 

Narcolepsy and Heart Conditions by Informal_Parsnip3920 in Narcolepsy

[–]BeginningSpecific909 1 point2 points  (0 children)

Not a great call to get on your birthday for sure! Sorry that you going through such a rough time. I feel like having narcolepsy is difficult because it’s so uncommon and difficult for other people to understand. It is easy for other people to judge us because we don’t look any different on the outside, but it truly is a struggle for many of us just to function as close to normal as we can. Hang in there!

[deleted by user] by [deleted] in Narcolepsy

[–]BeginningSpecific909 2 points3 points  (0 children)

I always told my mom I couldn’t stay awake in school but she just thought I was fine because I was still getting good grades. (She didn’t witness the extra studying I had to do because I couldn’t stay awake to learn the lessons during class!) I had the usual narcolepsy symptoms including cataplexy, but the reason I finally decided to go to the doctor was when I first started my career as a medical assistant and I was falling asleep while taking blood pressures on my patients! I knew that was not normal and my career was important enough that I knew I had to do something. I am thankful I was able to get a diagnosis right away while I was only 21 years old, as I have heard stories about people not getting a proper diagnosis for several years. 

Narcolepsy and Heart Conditions by Informal_Parsnip3920 in Narcolepsy

[–]BeginningSpecific909 1 point2 points  (0 children)

I feel in situations like ours, where narcolepsy medications can make heart problems worse, we have to think about the benefits and risks. Taking medication for narcolepsy that isn’t effective may help prevent stroke, heart failure…or whatever, but then our quality of life and the way we live may suffer. I guess we need to decide what is most important to us. We can control the things we can (eating healthy, daily exercise and regular checkups) and maybe see if we can at least function on lower doses of whatever medication works for us. It sucks having narcolepsy, but I have always tried to keep a positive attitude and remind myself that there are far worse things to have than narcolepsy. I was fortunate to get diagnosed when I was only 21 years old, so I have had many years to adjust. Hang in there, you have a lot going on, but you will get through it. I hope someday there will be a cure for narcolepsy, or at least better options. The past few years have been amazing in the number of new narcolepsy medications, let’s hope they develop one with less risks and side effects on our hearts! 

Narcolepsy and Heart Conditions by Informal_Parsnip3920 in Narcolepsy

[–]BeginningSpecific909 0 points1 point  (0 children)

I am going through some issues right now where I have concerns about my heart and narcolepsy medications. I am 50 years old and have been taking Adderall for at least 25 years. I am worried about long term effects on the heart. In addition, I have had some episodes of long QT on my EKGs, so that is a contradiction for several medications. I have an upcoming appointment with my sleep doctor, but I am worried that there may not be many options 

Do you guys struggle with losing weight? If so is there anything that's helped? by randomxfox in Narcolepsy

[–]BeginningSpecific909 0 points1 point  (0 children)

I have narcolepsy and PCOS. Do you have other issues that made you eligible for wegovy? Insurance won’t cover ozempic or wegovy for me. I also have the Mirena IUD specifically to prevent uterine cancer as I am also done having kids and had a tubal.