I was shocked to find out a couple weeks ago that I have Narcolepsy, I was in disbelief. I have struggled with constantly being tired my entire life. People around me never believed me. Even as a child I wanted to nap constantly and I never had any energy. At a young age I was diagnosed with depression. The treatment for the depression helped, but it never seemed to be enough. I had very visual, intense dreams. I slept walked and talked my entire life. In my dreams sometimes I would act out, and then wake up and realize what I was doing. I had a sleep study done when I was in college in 2010 to rule out sleep apnea. Of course my primary doctor told me my sleep study was fine. I continued to struggle and managed somehow to make it through college. I work as a nurse now at a hospital. I was talking to an MD about my struggle and she suggested I go pull my sleep study from the medical records department. Once I pulled the study I showed it to this MD. She told me that she was not a sleep doctor but it did not look normal, and then she suggested I go to a sleep specialist. Finally, I went to see the sleep specialist. He told me that my sleep study I had done 4 years ago was very far from normal, he continued to tell me that my sleep was extremely fragmented. The doctor continued to talk to me for 2 hours and at the end of our conversation he said he was almost positive I had Narcolepsy. I had another sleep study done a week later, and I also had a multiple sleep latency test. Just last week the doctor told me I do have Narcolepsy for sure based on my tests and my history.
I am somewhat angry that I have suffered so long and people around me thought I was crazy. My doctor started me on Nuvigil and in another week he plans to start me on Xyrem. He felt it was better to start one medication at a time.
I would like to know if these medications have helped other people. I also feel like I can’t lose weight and I am wondering if now knowing this, will it be easier to lose weight? So far I have taken the Nuvigil, and it helps but it does not help with my exhaustion, it pretty much just allows me to get through my work day.
Hi Gretchen! I totally understand your frustration. It took 10+ years for my diagnosis of narcolepsy. After about 5 sleep studies and 2 MSLT tests I was diagnosed by the same doctor that diagnosed me with Sleep Apnea. The cpap machine never seemed to do much for me and I complained of being tired for years. After 10 years my doctor re-did the MSLT and diagnosed me. I was given Nuvigil too and it never seemed to do much, just like with you. It seemed to only keep my eyes from closing but I still felt all the exhaustion. After a year of taking it I became very emotional and depressed so I had my meds switched to Adderrall. In the beginning I thought this was the best thing in my life. I was never so alert before. Now after 2 years on it, it still helps me out a lot but it does make some people have bad side effects. For me I get agitated quickly, I'm always picking at soething, and in the evening when I wears off I do get emotional. I also had some hair thinning but I think it was from stress and because this med speeds everything up it seems like stressful things are even more stressful. It does also make you not hungary much and I lost 50 lbs by eating right but gained 25 back over the last year from eating too much sweets. This med makes me crave sweets too. I wanted to switch to Vyvanse but my insurance will charge me way too much so I'm just staying on this for now. Good Luck and I hope you find the med that works best for you. Keep in touch:)
Hi & welcome Dancermom,
I completely understand your frustration. Even here in Australia,I too had a 10 year long wait to finally get a diagnosis. It seems we all have that much in common lol…I was even told by a Dr many years ago that it was all in my head! At least when my daughter started showing symptoms (more obvious around pubity)I jumped straight on it.
I have a strong genetic link with Narcolepsy in my family…4 generations (6 individuals). Do you have anyone else in your family with the symptoms?
Over the past 15 years I have tried Methalfenidate(Ritalin),Dexamphetamine & now Modafinil(Modavigil). The Modafinil works only slightly, not on mental/ cognitive functioning or the exhaustion,which drives me crazy but…yes…that’s it, it stops you from closing your eyes.Its like the lights are on but no-one is home lol
Oh, I have found that taking a tricyclic anti-depressant at night helpful in reducing the hallucinations, without to much of a hangover feeling in the mornings.
I have learnt to slow down in life, eat smaller meals low in carbs high in protein & to go for regular walks…as hard as that is oh &…short naps are good too.
Thanks everyone! Sorry it has taken so long for me to respond, I am still figuring out how to work this website! Kelbel, thanks for the great advice. No one else in my family has the symptoms. However, my mom does have Addison’s Disease, Bipolar, Borderline Personality, and a bunch of other health problems. I did not have much of a childhood as my parents divorced when I was about 8. Simply put I have been my mom’s caregiver for along time, as her mental illness has really worsened in the last few years. My mom’s uncle also had Spinocerebellar Degeneration, and he ended up succumbing to this disease. He died as a prisoner in his own body. I have been on Ritalin, Adderall, and now Nuvigil. I have been on every antidepressant in the book. Currently I am on Prozac, and it is my second run with it.
SleepingBeauty, thanks for your post. I’m glad to know you have felt my frustrations too. What is Vyvanse?
Scott, Ranger, and Dancer Mom, thank you all so much for your support. I appreciate it greatly.
Vyvanse is another med given to narcolepsy patients. I was told it is the lastest drug so it is still probably fairly new. It is missing one ingredient that Adderrall has and I think a different one was added. It is supposed to be more smooth in that it last a lot longer and you do not have ups and downs like you may have with Adderrall XR. For me the Adderrall gets me going but then when it wears down, I start to feel the fatigue and low mood. Then after about 4 hrs I have to take another one. Vyvanse I believe is one pill a day.
It seems that different medications work for different people, so there may be some trial and error needed in what you try before you find what works for you.
Give everything a chance, try not to feed any fears about any medication. Every medication that doctors prescribe for narcolepsy, and cataplexy, have made a significant enough difference to enough people that they are worth trying. I say this because I wrestled with fears about the medication that ultimately saved my ability to function. I also tried several meds that didn’t work due to side effects, but other people take those meds to great benefit.
I hope you find what works for you asap.
I was only diagnosed at the end of January. I also had difficulty losing weight no matter what I tried. I take Provigil daily - I think this is similar to nuvigil. Since I have started it I have lost at least a stone and a half in weight without changing eating habits etc. The majority of this weight was lost after 8 weeks. I can only put it down to the medication I am taking.
You aren’t crazy :). I felt angry after diagnosis when on a med trial realized that it was possible for other folks to remain alert for hours at a stretch. It’s some kind of grieving, this realization of our difficult experience.
Be patient with the med trials. I hope you find some good options!