This topic contains 4 replies, has 3 voices, and was last updated by Ferret 1 month, 3 weeks ago. This post has been viewed 163 times
- June 8, 2019 at 1:06 pm #10681
Hello, this is my first post here. I have not been diagnosed with a sleep disorder as of yet, and it may never happen, but I came here because I know the people here have been through the whole process and I’m feeling anxious for my upcoming test.
I’m 25 now. When I was 18, I started seeing the doctor that I couldn’t sleep and was tired during the day. I was scheduled for a PSG+MSLT. However, this test was flawed from the start. Shortly after the MSLT was scheduled, I was told that because I was taking an antidepressant, an MSLT would not be accurate, but because the prescribing psychiatrist told them it would be detrimental to my health to stop the medication for at least 2 weeks before the test, it was simply cancelled and never performed. The PSG was also flawed. At the time I was 18 and just became a student in college, and I had no car. As a result my mother had to drive me to the sleep center. She had to be at work the next morning and asked the technicians if they could end the test about 2 hours early so she could pick me up and have time to get to work. They did not want to, but they agreed. The PSG ultimately showed that I had just some minor impairment starting sleep, and there was really no follow up. The center that ran this test has since closed completely.
Years later I’m having the same problems, only worse. I have now graduated and work full time, in a position where I’ve been promoted several times, but at this point my performance is suffering. I am miserable all day, I forget to do things, and lately I have been late, for which my boss wants to know why. I get worried doing things like driving, because I have fallen asleep at the wheel in the middle of the day. I went back to my primary care physician, and he put me through a wringer of blood tests for vitamin deficiencies and hormone abnormalities, but they were all normal (as I really knew). Finally, I was again referred to a sleep doctor. Stating my symptoms, she asked me if I thought I had narcolepsy. I said I hadn’t really thought about it, but I knew what narcolepsy was. She said she would be ordering another PSG+MSLT and that the MSLT would be performed, finding it interesting that it had crossed someone’s mind to schedule it before, and stated that the test would be conducted to rule out or confirm a diagnosis of narcolepsy type 2 (as I have never experienced muscle weakness).
However, reading over the disorder more, I don’t think this test will be helpful. I have terrible trouble sleeping at night. It usually takes me 2-3 hours to fall asleep without medication and whether or not I take medication any sleep I get is not restful. I was told that I have to fall asleep within about 8 minutes on multiple tests of the MSLT, but I don’t think this will happen. Yes, I am miserably exhausted all day every day, but I rarely fall asleep this quickly. There are days, usually several a week, where I can fall asleep within seconds and begin vividly dreaming immediately. Either this, or I fall asleep and don’t seem to realize that I have. For example, just yesterday, I got in bed to try to take a nap and was browsing the Internet on my phone. Suddenly I woke up and the phone was on the night stand next to the bed. I realized I had actually been asleep the whole time.
But nevertheless, this does not happen to me up to 4 or 5 times a day. Most of the time when I lie down to nap, it takes me a few minutes to fall asleep, almost always more than 20. The naps are unrefreshing and I wake up tired.
I’m just a little anxious because I told my boss I had finally consulted a sleep doctor and they wanted to perform this test to see if there is anything wrong. She agreed to let me have the two days off that I need to have the test with the understanding that it may help improve my performance to what she does believe I am capable of. The problem now is that I’m scared to death that if I don’t fall asleep within a couple minutes on these nap tests that the result is not going to be helpful. Not only will I have no explanation for my employer, but I’ll have no explanation for myself! I’ll still be exhausted, only this time I’ll have no answer, and I feel like no one will believe me that I’m really THIS tired if I can’t even fall asleep on this test. I can’t even imagine having to say anymore how tired I am during the day just to hear “But when given the opportunity, you didn’t fall asleep.”
Did anyone have issues like this or can just share any experience about this process?June 8, 2019 at 7:46 pm #10687
Hi, sorry you’re going through this but you’ve come to the right place.
First, you should know that people with Narcolepsy are terrible at saying whether they slept or not. Sooooo many people say they never slept for the mslt but really did. Please put that out of your mind.
Both the psg and the mslt should be looked at as an opportunity to chill out and relax and catch up on much needed zzzzz’s while professionals observe what’s going on in your brain. It’s not perfect by any means but it’s all we’ve got at the moment.
You should go and check out the sleep centre beforehand… 1) will there be food and beverages? 2) is the bed comfortable? 3) climate control? 4) sound control? etc.
You may want to take your own pillow etc.
YOU are being tested so YOU are in control of your comfort.
I hope you are no longer taking antidepressants because most do suppress REM and REM is one of things they are looking for. If your Doctor says that you cannot be off any meds, then that information should well noted on your chart and be taken into consideration when looking at results. Other things that suppress REM are nicotine and cannabis.
So, ask any questions that you’re concerned about and we’ll do our best to set your mind at ease.
Chin up. You’re taking a first step to diagnosis.June 9, 2019 at 7:02 pm #10703
Ferret is absolutely correct visit the sleep center prior to your testing, also check out the Physician that will be interpreting your results, make sure that they are Board certified and have experience in treating patients with narcolepsy.
Please relax there is nothing you can do to change the outcome of the test other than to not stress over it.
Actually you do not have to fall asleep within 8 minutes on the MSLT. What we look for is if you fall asleep and if so is REM sleep present.
It is important that you watch carefully what medications you are taking as there are a great deal of REM suppressants.
Do not worry if you do not get a diagnosis from this test, remember these folks are only getting a glimpse of your life in 20 hours you may need to repeat it again and if so then you will, just dont stop looking for answers.
I would suggest keeping a sleep diary about two weeks prior to your test date and give it to the Physician on your appointment.
I wish you all the bestJuly 26, 2019 at 9:42 pm #10993
Thank you everyone who replied. It was encouraging.
I can say at this point that I have completed the PSG and the MSLT and…I have results.
I do not, however, have narcolepsy.
The PSG went well. It was kind of miserable, but it went well. It wasn’t like home at all. In fact, the room was so dark and so silent I felt more uncomfortable. Nevertheless, I fell asleep quickly, and I woke up several times just as I do at home. The MSLT was horrible! I was so tired that day I sat in the same chair all day WAITING to be able to nap. Then, when the time came, I thought I wasn’t able to sleep at all during any of the naps.
But the results are in, and I actually slept in 3/4 nap opportunities. All the naps during which I fell asleep, I feel asleep in between 5-8 minutes (also including the PSG onset of sleep). However, I reached REM only after about 80 minutes of PSG and did not reach REM on any of the nap tests. Seeing this, the doctor said my results were not typical of narcolepsy, but rather a “moderate impairment” caused by idiopathic hypersomnia with the absence of apneas or limb movements. Sleep latency of less than 5 minutes would have been “severe.” Knowing this I can’t even imagine being “severely impaired,” as I have felt pretty impaired for months.
I have to say I was at first disappointed when I heard IH because it is so poorly defined online and even more poorly studied. However I am starting to feel more hopeful. As for right now, I will start a trial of modafinil on Monday (200mg at waking, and 200mg at midday meal as needed) and see how it works. I don’t want to tell myself it will or won’t work before I start taking it. At this point it’s just each day as it comes.July 26, 2019 at 10:20 pm #10995
“Each day as it comes”. That sums it up rather nicely. At least you now know that you have a problem and can set about the task of dealing with it. You may hit on the right medication immediately or it may take a lot of trial and error to find what works for you.
The most important thing is to never give up and do everything in your power to get some semblance of normality into your life. It’s a process and you just take “each day as it comes”. Some days are diamonds and some days are rocks.
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