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Living with Narcolepsy

Treatment/Questions to ask doctor


#1

Happy Easter!!!!

I was just diagnosed with Narcolepsy, not a big shocker as I knew something was not right. I was a stay at home mom for 6 years I just went back to work almost a year ago. I love my job and am now in school to become a Montessori teacher, have two active children one is soccer and the other is in softball so my evenings are spent at practice and my days working. My husband is a firefighter so he can be gone a lot. I first noticed my symptoms at the age of 18, thought I just required more sleep but I think even then I knew something was not right in my body. In early 20's I was diagnosised with ADD. I took Adderall off and on when needed through out my life. After a period of 6 years of staying home with my children, I went back to work in June of last year. Immediately I was barley able to function. Memory loss, extreme fatigue so sleepy, major brian fog so thinking was my ADD I went to doctor obtained a script for Adderall. But something still was not right I could feel the medicine diminish ( I take IR) and then the symptoms would return vigorously. On several occasions I would be at a stoplight waiting for a green light and start to feel the pull to sleep, this got my attention enough that I googled, Causes of Excessive sleepiness in daytime, Narcolepsy, see sleep doctor, neurologist. At first I thought, " No way" but on a whim I scheduled a appointment. Doctor informed me, " I am 99% sure you have Narcolepsy but need to have over night sleep study and MLST to confirm. After my results showed sleep latency of 1.5 min with REM in all naps, I knew what I was dealing with. I am to have my doctor appointment in 5 days and would like to know what medications seem to best counteract the symptoms from others experience. What are some questions that should be ask during visit? Should I take my husband with me so he can fully understand the condition? Thank you so much!!!!


#2

Hi Jeanetta,
It’s very good to have a supportive spouse attend any appointments. You might mention it so enough time is scheduled. As for medicines, you’ll probably start one at a time until you find one that works best for you with the least side effects. Best of luck with your treatment.
I’m glad you were finally diagnosed correctly.


#3

Thank you Carol! This is day 3 of nuvigil and its one rough roller coaster. Why do doctors prefer this? I was better off having periods of extreme crashing on Adderall. I am nauseous then bam headache the some asked me something and I become really irritated. I tried to work in my coursework and I swear I think I had automatic behavior then snapped out of it with major brain fog. Good lord! I think in 3 days I have had 2 hours of clarity. Oh and the best part I am sleepy but awake that’s just great. Then at bedtime even with my lunesta it’s a struggle to fall asleep. I lowered the dose from 150 to 100 then as per dr could try one and a half pill did that same thing. I feels like it changes my personality. Then I believe she said if doesn’t work for me would try xyrem well after research I and husband did I’m not liking it I have little to no cataplexy some jaw slagging when nervous but I also have two girls one a teenager and one almost so no that’s not happening here! She never mentioned other options so what now? I think I was doing better at my physiatrist with two IR Adderall a day, so defeated really thought I was finally on right track


#4

Dear lady, I do understand your frustration. When I was diagnosed 12 years ago, I had a wonderful career, my husband was a police Sgt and I had a young daughter very active in school. I tried all the meds they put me on ( and there were many) simply finding what worked for me. I ultimately stayed with Adderall 30mg 5 times daily if needed, Celexa for my cataplexy, and Klonopin 2 mg for sleep at night. I can tell you I don’t always need 5 a day but there are times I do, ie; my Mother becoming ill and passing, special life events, etc… I have yet to master the sleep at night thing, Ambien was too strong for me, and it caused naucturnal eating, as well as hallucinations. Xylem scared me because my husband worked nights and I feared I would not hear my daughter if something happened. So, I went with Klonopin. It’s not totally effective, I think I need it to be increased possibly from 1 and a half tablets of 2 mg. I just don’t want to take more meds. You will have to find your perfect match in meds, and it takes time, but that’s what we are here for. Let us know your progress, it’s a long, hard road but you aren’t alone!