I am new to this and I tried to post something for all and I think I ended up just putting it on Nel's wall oops. Thanks Scott for showing me what to do! I apologize ahead of time for all of my questions sure to come :)
I am curious if a sleep study will definitively show that I have narcolepsy, or if they will have to do other tests. Is it ever possible that it won't be evident in the sleep study? I just know in my heart that I have narcolepsy but I can't help to think "what if I just happen to sleep really well the night of the test and it doesn't show up". Is that possible?
Also wondering if it is possible to have a range of affectedness. Meaning I am typically able to fight sleep until I finally give in. But I don't think that I have ever just fallen asleep mid-conversation. I find that if I interested in something I don't feel as tired or at least it doesn't consume me. Does anyone else experience this?
Never apologise for asking questions Amanda. That is exactly what this forum is here for:)
I have just woken up in a London UK and I am glad You were able to find Scott to tell you what to do to post a Discussion.
I am a volunteer mod on this site with a different neurological condition which disrupts my nights so that I share with you some of the daytime symptoms. I am only learning about narcolepsy so I have to leave it to others to give you informed answers. You wrote in your earlier reply that you feel as if your memory is affected and the sadness at not remembering family moments and I can understand your frustration. It is a problem I have had increasingly but I am not a young mother with a lifetime of memories to build up. Could it be made worse by the medication you take do you think?
Can someone who knows what they are talking about answer Amanda’s questions?
Hello Amanda,
Hum, where to start? I had 5 sleep studies - none of those doctors were brave or qualified enough to diagnose my narcolepsy. Doctors here in the US are hesitant to do it.
My narcolepsy was first diognosef by another type of doctor biased on my passing out, sleep records and (gene study for another disease). It was confirmed by another doctor a neurologist again a second gene study, sleep and passing out records. The second doctor offered me “drugs” which I declined. The first doctor confirmed my desire to not take drugs but learn how it affects me personally and adjust my life style. BUT never drive when sleepy, tired or cognitively impaired. Looking back I can see I’ve dealt with this since I was a small child. It explained the nightmares and paralysis I experienced when I was young and still do. I drive still and my PCP trusts my judgment.
I’ve taken an alternative approach to healing many of my conditions I deal with. Organic diet, gluten free and significant vitamins and supplements. I have malabsorption issues from celiac disease. Currently taking a therapudic dose of D3 and others just to be on the low end of the lab ranges.
We must be our own health advocate and learn as much as we can for ourselves. Then decide how we want to approach our own treatment.
Hope this helps,
Ranger
PS: One thing I know is high stress levels are very bad for us if we have narcolepsy…
Hello, they normally do a night sleep study followed by a series of tests that morning called the MSLT…multiple sleep latency test. This is the test that I believe is used for the diagnosis of narcolepsy. You are given 20 minutes to nap, then you have to stay awake for 2 hrs and then repeat the same thing a few times. They say if you fall into REM sleep at least 2 times within a certain amount of minutes during the series of naps that you have narcolepsy. However, after 10 plus years of me complaining and struggling my doctor made my diagnosis with just 1 time falling into REM. I believe it’s possible to have narcolepsy and not show on the test because I took a number of tests throughout the years and was never told anything about narcolepsy. …although I had all the same symptoms. Another issue for me is that I have sleep apnea so I believe my doctor just figured that’s why I was always tired and never understood the degree of constant exhaustion. I also don’t think I stresses the degree of tiredness enough until I really couldn’t deal with it anymore. I hope that helps alittle.
Hey hunnie, A sleep study can show that you have Narcolepsy or Narclepsy type symptoms. They look for multiple Thing within and MLST, however an MLST is always done after an overnight study to rule out apnea. If you have "N" like symptoms, they can do a blood test called a "Narcolepsy Panel" which can test for a complex called HLA in your blood. Some people can have this and not have "N" but you cannot have true "N" and not have this complex as "N" is an autoimmune disorder. If there is any doubt about your test, even in your own mind, just ask for this test. It is painless and gets you much quicker answers. There are many "Narcolepsy Type" disorders out there that aren't necessarily "N" but are treated the same when it comes to medications.
As for fighting sleep off, yes, you can do this sometimes. I know many people who do this. I have many types of sleep attacks. I have the kind you talk of, the kind where you just fall asleep and I have micro sleeps. I also have mild Cataplexy. The Cataplexy is a new development and is getting worse gradually. Your Narcolepsy can change and also can get worse with environmental stresses and aggravates.
I don't believe anyone's "N" is the same. some can drive and work, while others cannot. Some only suffer mild autoimmune effects while others have fully compromised immune systems (although I think this may have to do with a co-morbid effect). Some don't get sleep paralysis and others don't. So you get what I am saying, you cannot judge your experiences by another's. You really have to talk with your doctor and if you do not feel comfortable with your doctor, than find another one.
You are in charge of you health, not them. That is the most important thing I could tell you. Don't let them intimidate you, take charge and do what you think is best for you!
Sleeping Beaty, the MLST looks at many components. The REM is only one of them. Your mean sleep time (how fast you fall asleep) is another big part of that. They also look for things when you sleep at night. Periodic Limb Movement Disorder, How many REM cycles and how long they are throughout the night, how many times you awaken and many other things. That is one big thing why they do them together. They also have cameras in your rooms, so they can see how difficult it is for you to stay awake or if you are unknowingly dosing. You are also only allotted 6 hours of sleep, so you are put in a situation where you are more tired the next day, this is very important. Then the every 2 hours and 20 minutes comes into play. They are depriving you of restful sleep, which is of dyer importance to someone with Narcolepsy and it does something to your brain waves.
SleepinBeauty said:
Hello, they normally do a night sleep study followed by a series of tests that morning called the MSLT....multiple sleep latency test. This is the test that I believe is used for the diagnosis of narcolepsy. You are given 20 minutes to nap, then you have to stay awake for 2 hrs and then repeat the same thing a few times. They say if you fall into REM sleep at least 2 times within a certain amount of minutes during the series of naps that you have narcolepsy. However, after 10 plus years of me complaining and struggling my doctor made my diagnosis with just 1 time falling into REM. I believe it's possible to have narcolepsy and not show on the test because I took a number of tests throughout the years and was never told anything about narcolepsy. ...although I had all the same symptoms. Another issue for me is that I have sleep apnea so I believe my doctor just figured that's why I was always tired and never understood the degree of constant exhaustion. I also don't think I stresses the degree of tiredness enough until I really couldn't deal with it anymore. I hope that helps alittle. :)
You all have been so helpful! I really appreciate the responses! I am going to do some more research! So my next question is does anyone else have memory issues? I mean I feel like a crazy person sometimes because at times I can't remember what I did the day before unless I really stop and think hard about it. Is there anything to help with this issue?
Again, I can't stress enough how thankful I am to have found you guys!!
I’m sorry when did you get here? What was the question? :). No really, absolutely! Memory loss is a problem for those suffering from “N”. You’re not crazy, unless you are not telling us something… is there something you’re leaving out? LOL :).
One thing you will learn about me is I try to find humor in everything. With my life, if I did not do this, I would be miserable. If you need anything at all just send me a message
Thanks Kristin. You are a sweetie! I think I'm just scared to lose memories of my little ones. It's just frustrating because I am only 29 and I hate that I have so much trouble with my memory. I wish there was something I could do.
KristinTMAAF said:
I'm sorry when did you get here? What was the question? :). No really, absolutely! Memory loss is a problem for those suffering from "N". You're not crazy, unless you are not telling us something... is there something you're leaving out? LOL :). One thing you will learn about me is I try to find humor in everything. With my life, if I did not do this, I would be miserable. If you need anything at all just send me a message
I thought I didn't sleep at all in the hospital and the results would be skewed. But I had interruptive REM and Theta waves quickly appear. The EEGs will display all the stages of sleep.
I am high functioning now so rarely experience cataplexy or hypnogogic hallucinations, but still have sleep apnea & sleep paralysis and EDS. Some days I can stay awake but the next day I am exhausted & need to nap. So I need to plan for events and take breaks. A career is a huge challenge. Priorities are paramount to accomplishing anything...
Hi Amanda, When I had a sleep study, in the room there was a king-size mattress/box spring, a TV, and a puffy recliner. Uh-oh! Comfy things put me to sleep! But at night the bed was nice.
There was a nurse who came in to tell me when it was time for a nap. The second time, I shouted “I LOVE you!” She was an angel, kindly asking me to take a nap when I needed one, which is often. I wore lots of wires, but maybe that’s not done anymore? Like others have said, measurements are taken and interpreted.
Suggestion: If you are treated with medicine but are still struggling, be sure the doctor hasn’t disregarded mild apnea. I got a c-pap only after 10 years; I had migraines and depression, which occur more frequently in apnea patients. I’m getting better.
Memory: I have trouble with memory if depressed. If I’m tired, I don’t have energy to remember. I think treatment will help your memory.
Best of luck!
Amanda, I am only 29 too! I understand your fears completely. Its hard. I’ve not been able to drive for 6 years now due to all of my health problems. My Narcolepay diagnosis sealed that deal for me permanently. Just yesterday I was in the store pushing a cart with my daughter in it, I was more tired than normal, but I fell asleep and continued walking. I woke up right before I walked my cart straight into someone else’s. I voulsnt help but think,thank God I don’t drive. What if that’d had been a car I was driving?
Thanks everyone for the info! Wow Kristin that would be scary! I finally have my sleep study set up for July 21st. I'm excited to finally get some answers! I will update as I find out the results.
