I have been diagnosed - finally! Each year at my physicals starting at age 21 I complained of extreme fatigue. Always got the “it may be your thyroid, so lets run labs.” I would get the envelope in the mail confirming I was normal. Year after year I began to feel I was the problem. It was laziness I was certain. This led me to push and push myself more each day. I gained weight, fell asleep typing pathology medical reports at my job. Waking to recall doing none of it. I was waking at night screaming because I saw a figure in my room. It was not there. I would have daytime naps when the kids left for school that would go for hours. I just thought, I work FT from home and have three kids - I am just tired. I do recall as a teen sleeping off and on in class, after school also. I had the occasional wake up, can’t move and see someone around me but could not “snap out of it.” I finally took this matter into my own hands because my sleep at night (if you call it that) was horrible. I woke up every 10-20 minutes. I was getting no night sleep. I was having “jolt” like activity at night waking me up. I made a appt with a neurologist who ran a ton of tests. He found a Chiari - but that was not it he said it was too small. Overnight EEG showed possible seizure activity over 20 times. Overnight sleep study showed not a lot of sleeping and wake up arousals. I got put on seizure medicine and referred to sleep doc to help in the case. Immediately he said, I think you have narcolepsy after a history was taken. Another sleep test and first sleep latency test was done. My mean sleep latency was 4.8. The shortest 2 minutes. I would tell them after a 20 minute nap I didn’t sleep. Yes, yes you did. Now on Provigil 200 mg 2tx a day, lamictal and lunesta at night. I do not recall many dreams. I am not having many sleep attacks during the day - some days are still hard but feel better overall. But - I have gained weight. I struggle to have energy even though I am awake. I just don’t like the future that lays ahead medically speaking. Does anyone want to share their struggles & anything that helps them?
I can relate to this 110%. I was told for years it was probably my thyroid and it never was. I got a sleep test through a fluke handout in the waiting room. I thought I possibly had sleep apnea, but after my sleep test it was definitely Narcolepsy. I have been on a myriad of drugs over the past 7 years. Currently I am on Xyrem which is expensive but worth it and my insurance does cover it. I am on a low dose of Ritalin which does little to nothing. My issue is I can stay awake for the most part, but I still feel crappy. I am awake, but don't have any energy to do things. Exercise helps some as well. I believe part of the failure of my marriage was my husband did not understand the illness and that I really was tired all the time!!! He thought I was faking it or being lazy. Just hang in there. When I was on Xyrem and Adderall I felt the best, but my neurologist wants to try building up my Ritalin dose first for cardiac and stroke reasons I have.
I completely relate to this. After years of different doctors and different diagnosis, including a neurologist telling me I need a psychologist I finally received a diagnosis of narcolepsy. I had been seeing a neurologist at Johns Hopkins who put me on a small dose of Nuvigil to start, this did nothing, so we increased the dose. The increased dosage lasted for a year or so but it just wasn't doing the trick anymore. The doctor suggested I may need to increase the dose again but it already made me feel anxious so I wasn't ready to do that. At this point I began doing my own reasearch online and spoke to many researchers at the NIH. Online I came across a small study done at Duke University showing an improvement in patients who followed Atkins diet. At the time I pushed this to the back of my mind while I continued my own research, I have never been much of a 'dieter'. A few weeks later I figured I would give the low carb diet a try, so I focused in on carbohydrates and what they do to the body. I began tracking my carbs and lowered my overall carb intake, I figured I would try for a week and see what happened. At this point I didn't have very high hopes but to my surprise this made a remarkable difference. Since I started this I cut my medication in half, and overall feel more present than I have in a very long time. I still have good days and bad days, but the fewer carbs I eat in a day the more awake I am and bonus I lost some weight :).
If nothing else we can hope that the FDA's new patient focused drug development initiative results in some miracle drug, they had a meeting on Narcolepsy yesterday.
Good luck!
Melissa
It seems like it is SO common for doctors, friends, and family to misdiagnose or misunderstand the symptoms of N, before and after diagnoses! It has to be one of the most frustrating parts of having it, and probably one of the highest contributors to the depression and anxiety that seem to come hand-in-hand with our disorder.
For example, I once suggested to one nurse practitioner that I had N after doing the research On-line and she looked at me with disdain and said "You just have sleep apnea." Mind you, I hadn't had any tests yet, so the fact that she said that I had anything was pretty ridiculous, but the way that she just dismissed me was so maddening. For years before that I had been going to various doctors telling them that I had a really hard time getting to sleep at night and that I was tired all of the time, and they almost always told me to cut down on caffeine and exercise more, even when I explained that I had tried that and that it never made any difference. Then there were my mother and her friends... they were convinced that I was abusing narcotics because I was on methadone treatment after having been prescribed it for pain relief and ending up addicted (mind you, I never illegally abused narcotics - everything that I took was with doctor's consent). Heck, I don't (and never have) even drink alcohol or smoke, so it was really awful to know that people thought that I was abusing drugs no matter how often I tried to explain that I was just so tired.
Frankly, the thing that has helped me the most is to talk to others who have gone through this, just like you're doing now. It also helps that I have an extremely supportive partner, though this may be in part due to the fact that she has her own "invisible illness" and has watched me struggle with sleep for years now.
Sounds all too familiar!
I can tell you from experience there is nothing you can do to make family, friends or medical professionals understand. if you are lucky you will get a doctor who will do his best to help .
I have had narcolepsy since I was in grade school. Finally diagnosed in 1991 and then told in 2000 by an expert it was impossible to have both narcolepsy and Central Sleep Apnea. He apologized after doing a series of tests.
Women they jump to the thyroid. Men they say you are working to hard, playing to hard or depressed.
I take Modafinil 200 mg 3 times a day and usually 1 to 2 naps a day. I feel like I get about 5 hours of alertness and the rest I am in a fog. I do not commit to anything but make tentative plans and only know on the day if possibly i will be able to go through with my plans.
I have found naps are the key and sometimes they are short 15 minutes and other times they are 3 to 4 hours. I get at least 6 hours most nights.
ON a brighter note . Do you know why the Teamster Symbol is a Horse? One of the few animals that can sleep standing up!
Gosh, this too sounds so familiar. I was feeling better initially. Now three months post adding the second dose of Provigil having a lot of sleep attacks, & just plain tired again. I feel like I slug my way through the days. This time, I do it with the knowledge I have to face this each day. I will ask my doctor to see what else can be added to help as I am also gaining weight again. I hear this too is common. Thank you so much for sharing your story with me. I hope we all can do this more often.
Jensacutie said:
I can relate to this 110%. I was told for years it was probably my thyroid and it never was. I got a sleep test through a fluke handout in the waiting room. I thought I possibly had sleep apnea, but after my sleep test it was definitely Narcolepsy. I have been on a myriad of drugs over the past 7 years. Currently I am on Xyrem which is expensive but worth it and my insurance does cover it. I am on a low dose of Ritalin which does little to nothing. My issue is I can stay awake for the most part, but I still feel crappy. I am awake, but don't have any energy to do things. Exercise helps some as well. I believe part of the failure of my marriage was my husband did not understand the illness and that I really was tired all the time!!! He thought I was faking it or being lazy. Just hang in there. When I was on Xyrem and Adderall I felt the best, but my neurologist wants to try building up my Ritalin dose first for cardiac and stroke reasons I have.
I sure can understand the alertness part. I take Provigil two times a day at current. Being rather new at being diagnosed, I know he has been tweaking things here and there so far. I did not realize a third dose could be added. I do try to get walks in, and that gives me a small jolt. I am not on anything but the Provigil and wonder if anything else will be added. I see him next week and will ask. I am gaining weight, having sleep attacks again and feeling horribly sluggish again. Thanks so much for the support & taking time to share with me. I appreciate that so much. I do not know anyone with this disorder and have felt pretty alone in all of this! It can be overwhelming some days! How does one know what day will be a bad one or a good one? I have quit trying to figure it out!
RiverRat15 said:
I can tell you from experience there is nothing you can do to make family, friends or medical professionals understand. if you are lucky you will get a doctor who will do his best to help .
I have had narcolepsy since I was in grade school. Finally diagnosed in 1991 and then told in 2000 by an expert it was impossible to have both narcolepsy and Central Sleep Apnea. He apologized after doing a series of tests.
Women they jump to the thyroid. Men they say you are working to hard, playing to hard or depressed.
I take Modafinil 200 mg 3 times a day and usually 1 to 2 naps a day. I feel like I get about 5 hours of alertness and the rest I am in a fog. I do not commit to anything but make tentative plans and only know on the day if possibly i will be able to go through with my plans.
I have found naps are the key and sometimes they are short 15 minutes and other times they are 3 to 4 hours. I get at least 6 hours most nights.
ON a brighter note . Do you know why the Teamster Symbol is a Horse? One of the few animals that can sleep standing up!
My goodness you sure have been trough a lot & I appreciate the time you took to share with me. I do feel that helps so much. Finding people who have it and hearing stories on here help me understand more & cope. Thank you for that! It is a frustrating way to live and I am just trying to get used to the idea that this is it and each day may not be the same, the meds may work for a while, then not - just stinks but I will stay positive! I am very happy to have a wonderful doctor who sits and listens, asks questions and is making changes so far where he deems necessary. I hate the idea of taking medicine, but what other choice is there to stay awake, alert, etc for narcoleptics. Thank you again :)
Lazarus said:
It seems like it is SO common for doctors, friends, and family to misdiagnose or misunderstand the symptoms of N, before and after diagnoses! It has to be one of the most frustrating parts of having it, and probably one of the highest contributors to the depression and anxiety that seem to come hand-in-hand with our disorder.
For example, I once suggested to one nurse practitioner that I had N after doing the research On-line and she looked at me with disdain and said "You just have sleep apnea." Mind you, I hadn't had any tests yet, so the fact that she said that I had anything was pretty ridiculous, but the way that she just dismissed me was so maddening. For years before that I had been going to various doctors telling them that I had a really hard time getting to sleep at night and that I was tired all of the time, and they almost always told me to cut down on caffeine and exercise more, even when I explained that I had tried that and that it never made any difference. Then there were my mother and her friends... they were convinced that I was abusing narcotics because I was on methadone treatment after having been prescribed it for pain relief and ending up addicted (mind you, I never illegally abused narcotics - everything that I took was with doctor's consent). Heck, I don't (and never have) even drink alcohol or smoke, so it was really awful to know that people thought that I was abusing drugs no matter how often I tried to explain that I was just so tired.
Frankly, the thing that has helped me the most is to talk to others who have gone through this, just like you're doing now. It also helps that I have an extremely supportive partner, though this may be in part due to the fact that she has her own "invisible illness" and has watched me struggle with sleep for years now.
It's like looking in a mirror...scary. I don't have a schedule that works for the Xyrem though. I was on the Adderall, but we had to keep increasing to make it work, so they changed it to Ritalin. I've had Narcolepsy in a noticeable manner since I got pregnant with my daughter in 1995, but was told last year when my second sleep study was done, and they did a blood test, mine happens to be genetic, and thinking back to my younger years, see patterns that resemble small signs.
Jensacutie said:
I can relate to this 110%. I was told for years it was probably my thyroid and it never was. I got a sleep test through a fluke handout in the waiting room. I thought I possibly had sleep apnea, but after my sleep test it was definitely Narcolepsy. I have been on a myriad of drugs over the past 7 years. Currently I am on Xyrem which is expensive but worth it and my insurance does cover it. I am on a low dose of Ritalin which does little to nothing. My issue is I can stay awake for the most part, but I still feel crappy. I am awake, but don't have any energy to do things. Exercise helps some as well. I believe part of the failure of my marriage was my husband did not understand the illness and that I really was tired all the time!!! He thought I was faking it or being lazy. Just hang in there. When I was on Xyrem and Adderall I felt the best, but my neurologist wants to try building up my Ritalin dose first for cardiac and stroke reasons I have.
Great Post. Thank you !!!
Thank you for your friend request. Your story sounds so very similar to mine that we could be twins! I, too, hated the night with the jolting awake or feeling that someone was standing over me while I was sleeping. I have nightmares every night. I have tried every drug available -- I am allergic to Xyrem -- and I can tell you from experience that even though Provigil or Nuvigil help you through the week, you will probably have to "make-up" sleep on the weekends. I was told that seizure medication would help, but it didn't. I still have night awakenings and hypersomolence during the day. I used Provigil and Effexor for ten years while working for a corporation. Slowly, (about six months time), I couldn't concentrate on my job, I fell asleep several times a day and started to panic. I started to exercise vigorously, but that didn't help. I was constantly fatigued. Here's the good news -- you are feeling better today. Look at each new day as a challenge, but also a gift. Stop and smell the roses and understand that no one is perfect. You have narcolepsy. Give yourself a break and accept it and tell people about it. Most people will not understand, but honesty is the best policy here. I hate the thought of living the rest of my life on medications. Someday, neurologists and researchers may find a cure but in the meantime, we have to find at least one or two meds that control the symptoms somewhat.
Best regards, coping