Lookingforanswers

Waiting for sleep study

7 posts in this topic

Hello, I'm 33 y/o female in the U.S. I recently visited a neurologist due to excessive sleepiness after having thyroid and hormone levels checked. This Dr. had me pegged after answering several questions and observing my behavior, which I had never really noticed before. He said I most likely have Restless Leg Syndrome and have several symptoms of Narcolepsy (twitching/jerking, sleep paralysis, acting out dreams, having dreams during short naps). So he ordered a sleep study and an MSLT that I will be doing soon. After that visit, I started thinking back through my childhood and feel that I may have narcolepsy. I would often have my legs buckle/feel weird when laughing & standing, vivid dreams with naps, waking up in the middle of a dream acting out what I was doing in the dream like sweeping the bathroom floor, during classes in the military, I would often stand up and walk around in the back of the classroom & fall asleep standing up and walking, no matter how much caffeine I took in, hitting/pinching myself, I could not fight it. People nicknamed me Narcy short for Narcoleptic. I just laughed it off, but now I think they may have been right -_-. I've always been tired, take several naps throughout the week/weekend to have the energy to get through the day. What scares myself and my husband the most is how I will often fall asleep driving and as a passenger will fall asleep 90% of the time. It's just something that's always been normal for me but it comes and goes in frequency and severity so I just thought it was something that was a part of me. The first time I remember having sleep paralysis was when I was 9 years old and it scared the crap out of me. I guess I'm coming here to say hello and even though I haven't been diagnosed yet, start researching information in case I am diagnosed to learn more about how I can live with it as normally as possible. I will be graduating with my Bachelor's of Science degree in Nursing in 6 months, I'm a reservist in the military and I have a husband and two kids. I don't want this to stop me from living my life but I also hate being so exhausted all the time. I guess I don't really understand anything about narcolepsy other than google saying they don't know how a person gets narcolepsy and there's no cure. Hoping, after reading through your posts and information, I'll have a better idea of what it is and what to expect.

Thanks for listening to my long winded rant :D 

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There have been a lot of people that have gotten an N diagnosis and suddenly, a lot of their past life experiences/medical history just clicked and made sense. It's most likely underdiagnosed, especially in youth/children that can't really be their own advocate and have no baseline for how they should be feeling. Ppl like me who acquire N in adulthood and can at least see the state change, but someone who has been that way for as long as they can remember really has no way to know what they are feeling is different than normal.

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That makes sense, once you've been diagnosed and have started treatment, have you noticed a change? Are the treatments manageable? I've read that low carb diets are usually put in place (I've been on it for a week now for weight loss, if it helps with sleep double bonus), exercise, and probably some type of stimulant drug to help with sleepiness. I'm worried it will effect my licensing for nursing and ability to work/drive if I am diagnosed. Have you heard of running into issues with stuff like that? Thanks for the reply too!

 

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Good treatment was elusive for me. I've found some meds that help some, but I mainly think my my body is adjusting to having N after all these years, so I've gotten a bit better. I believe my exercise regimen has helped as well. Others have had more luck in finding successful Rx treatments than I; I'm type 2 N which the general consensus seems to be it's harder to treat successfully. One thing you will have to realize if it is N, is that you will never be like other people. Nothing exists that can fix the orexin system deficiency in any meaningful way. All treatments are geared towards symptom management. I'm not saying that to try to discourage you. It's just that expectations need to be managed going forward, or you'll set yourself up for a major depression later down the line. I just focus on trying to make each week a little better than the last one.

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21 hours ago, DeathRabbit said:

someone who has been that way for as long as they can remember really has no way to know what they are feeling is different than normal.

Looking for answers,

Your story sounds familiar in many ways.

Although the thread gets rather long, I am hoping that the beginning entry of my first post to the forum, dated February 18, under the title "Does this seem to fit for any of you?" might provide some helpful links and information concerning RBD and Narcolepsy with Cataplexy.

Here's the link to the thread that I referenced above.

I hope that you will find the information, help, and answers that you are seeking...Please keep us posted....

Sincerely,

Sleepy RBD

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Lookingforanswers

Narcolepsy is a very strange disorder, though most persons share certain symptoms, every patient experiences something different. There are patients who experience debilitating symptoms and there are those who lead a nearly normal (as possible) life. The goal of therapy is to control and manage the symptoms of your disorder and not let it control you. On these forums you will find extremely intelligent people who are just like you in that they too suffer from this disorder. Some of the therapies tried may seem a little far fetched especially given the fact you have been educated as a nurse. If I remember correctly I do not remember a single sentence in the nursing curriculum which describes or even mentions Narcolepsy.

Please keep an open mind and know that ultimately you will need to do what works best for you. There should be no reason that this disorder will affect your career as a nurse. On these forums you will find Physicians, Nurses, Attorneys Pharmacists and chemist, the most important and knowledgeable folks you will meet are all these people who have been where you are now, at some point. Their experience and knowledge are priceless, take what works for you and run with it.

Best of luck and keep us posted

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Thank you all so much for the replies! 

Deathrabbit, describing the proper outlook is a great way to prepare and I appreciate your honesty. Since I already deal with depression, I'm thankful for the honest insight of not curing the deficiency but managing the symptoms. I'd rather know the truth than sugar coated hope.

I'm heading to check out your link now RBD. You have no idea how this weight has been lifted off my shoulders. The guilt of fighting and losing the battle to stay awake during some of the most important events in my life has weighed so heavily on me and knowing now that it's not my fault is such a huge relief.

Natdoc your encouragement and explanation has given me such peace of mind, I don't know how to thank you properly other than to tell you how much I appreciate it.

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