What should I tell my psychiatrist about my sleep?

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I suspect I have narcolepsy or some other hypersomnia. I want to talk to my psychiatrist about it first, because we discussed it before, and he had encouraged me to get a sleep study (which I ended up not getting). My mood is a lot better than it was, but I still have periods during the day where I feel really sleepy; naps are refreshing, but often I feel sleepy again later. Plus, I'd have to get a referral but before I go to my general practitioner, who has given me a hard time about my complaints, I would like to have his support.

I want to try to prioritize what I say. Here is what I've come up with:

For years, I would have periods in the day where I would feel really sleepy, almost like I've been hit by it. When it occurs, my head often feels numb and my chest heavy. I've long wonder what this has been, and it's been the source of a lot of my complaints. If I'm at work or doing something, I'll often try to fight through it, but when that happens my ability to think and remember seems to go down the drain. If I sleep outside of my house (like in the car), it would often be only for about 10-20 minutes and I would often have vivid dreams during that period. I will often feel refreshed, only to feel sleepy again later.

At times, I have tried maintaining sleep hygiene to improve this. Indeed, I do try it and I wake up in the morning refreshed, and I think I should be able to conquer the day, but I would still feel really sleepy during the day anyway, going right back into having to fight it. I may try to take a nap, but even that is not enough. So I figure, why bother with all this sleep hygiene if it's not going to do anything anyway? I continue to have these issues everyday and they are a source of my complaints.

On a related note, when I'm under stress or feeling strong emotions I will often feel weak. When I hurry to the bus or train, and I'm running, I start to feel weak and often wonder, Why is it still so far away? Why am I not there yet? Once, someone else seemed to notice it. When I had a car accident that was the other guy's fault, but he tried to pin it on me anyway, and in the middle of the conversation I started to feel weak like I mentioned before. Sudden concern came over him and he asked me urgently, "Whoa! Are you OK?" Not interested in showing weakness, I barked that yes I was fine. These feelings of weakness have been a source of a lot of my complaints, also.

In addition, as we discussed, I've had these lapses, especially lately. Like that time when I was at the bank ATM, and put my debit card in and made to perform a transaction, but then I thought that I needed to check to make sure I had put my debit card back in my wallet. I checked my wallet and saw it wasn't there! I panicked a little, thinking what happened to my debit card? But then I remembered it was in the machine and continued my transaction. Other times, I'll be in the middle of doing something and then my mind goes blank and it feels like I was just dropped into the situation de novo. I have complained about these issues, too.

That sounds way scary. I'm glad you're trying to get it resolved because that's not a healthy or safe situation to be in. I think the letter sounds fine, but could you define what sleep hygiene is, or is that not important/does he already know?

And how does caffeine affect you, if at all? Do you still sleep right through it? Are you on any medications?

You should pursue this. Your "spells" of intense fatigue could conceivably be related to things other than sleep, such as low blood sugar. Or they may well be related to sleep. Either way, you will be healthier once you know.

It's perfectly reasonable to talk to your psychiatrist about this, but if he/she wants you to get a sleep study and your primary doc is the gatekeeper, you'll still end up going through your primary doc. Your psychiatrist can firm up your resolve to pursue this, however.

Sleep hygiene is good to practice, but if you have some sort of underlying medical problem (including sleep disorder), it won't be enough to solve it alone.

Sleep is something I have researched (trying to improve mine) for a long time. I could no doubt perseverate on the subject til other autistics get bored but let me hit a relevant high point or two.

I doubt you are narcoleptic. That and feeling sleepy are different things. Narcoleptics aren't aware they are going to sleep; it happens so suddenly. So if you are having trouble staying awake, you are simply sleep deprived.

Yes, blood sugar plays a major role and needs to be investigated. However most doctors in this country have trouble comprehending how blood sugar metabolism works so they are not in a position to first diagnose it nor recommend a course of action after that. Blood sugar is another subject I have researched since I have been hypoglycemic all my life.

Be aware too there is such a thing as an autistic sleep pattern. I saw it referenced somewhere several years ago but unfortunately they did not go into details nor can I find much about it anywhere else. Best I can tell from my own experience is that an autistic sleep pattern is simply unpredictable and haphazard.

I say tell your psych dr everything. Well, maybe let then broach the subject of autistic sleep pattern but everything you are experiencing for sure. But if they want you to give up your anti-depressant (assuming you are taking one) and take the viewpoint that you would be fine if you would simply try to sleep regular hours and stay awake all day everyday, thank them and move on.

Finally, please keep us informed. I am curious to hear not only how you are treated but also the remedies or courses of action they recommend.

This isn't true. As I understand, there are 3 kinds of phenomena in narcolepsy that some people might confuse with each other:

1.) Extreme sleepiness: The person becomes suddenly sleepy like they haven't slept in days, and sleep may become irresistible.

2.) Microsleeps/automatic behaviors: This is where the person falls asleep very briefly but they are still engaging in activity automatically (generally, whatever they were doing before the microsleep began).

3.) Cataplexy: Sudden loss of muscle tone, from your eyelids drooping through your head and shoulder dipping down and your knees buckling to collapse and paralysis while maintaining full conscious awareness, lasting from seconds to minutes, in response to an emotional trigger, most often laughter, but it could also be fear, anger, and stress. (This sign is specific to narcolepsy.)

Last edited by beneficii on 15 Oct 2016, 12:57 pm, edited 1 time in total.

Thanks. Whatever it is, I intend to get to the bottom of it. One big reason is so I can return to work someday. Having the intense sleepiness while working made working difficult. I remember there were multiple times a day when I would feel like I had to "rest my eyes", which of course concerned me I might get in trouble for sleeping on the job, and having to take naps on breaks and lunches, often controlling when I took them and causing me to return late from them. (EDIT: And at times my supervisor had gotten on me about it, and even wrote me up once because of the pattern.)

Considering I'm on disability, if I give that reason, that would probably give an indication that it's something we need to explore.

Last edited by beneficii on 15 Oct 2016, 12:31 pm, edited 1 time in total.

Can you log these episodes and then after a while see if you notice a pattern? I had something similar going on, but it was constantly happening in the afternoon. After a while I figured out that it had to do with what I ate for lunch. A couple of months into a gluten free diet the sleepiness disappeared.

There are so many things that could potentially cause this; the memory lapse makes me think of the kind of brain fog that is associated with IBS and celiac, but it could be a thyroid matter, or low blood pressure could be interfering with another condition.

It's definitely worth asking your doctor about it, but perhaps your psychiatrist can help you clarify your thoughts about it so that you can communicate more easily with the doctor?

Capital idea, underwater. I understand it could be many conditions; I've merely been intrigued by narcolepsy seeming too fit. Considering that it is a serious condition, that is all the more reason to bring it to a doctor's attention.

I am keeping a sleep diary. And having the psychiatrist help me communicate with the doctor is a really truly capital idea!

I know this may be a very long process, because to do sleep tests you often have to be off your meds for a while so they don't interfere with the results.

beneficii--

Obviously the powers that be have "adjusted" the definition of narcolepsy since the last time I looked into it. Not surprising. My understanding was that it only included your 3rd item, cataplexy. I still maintain however, that extreme sleepiness and microsleeps are not exclusive to narcolepsy.

And thank you for your tact and kindness in your response.

Sorry about that, I had posted this in the wrong thread:

I think I've been getting some good entries in the past couple days. I had stopped taking my Vistaril (hydroxyzine), which I take as needed, for a few days, which is a good demonstration because it has no withdrawal effects:

https://www.psychologytoday.com/blog/an ... -explained

I was still on my Wellbutrin, however.

The experience was unpleasant to say the least. I spent much of the day yesterday having strong bouts of sleepiness suddenly appear, but I would only be able to nap for about 20-30 minutes at a time. I ended up taking 5 naps. I then went to bed at around 1 AM and woke up at 6:30 AM, for 5.5 hours total. With the naps, total daily sleep time came to 7-8 hours. On previous days when I wasn't taking it, when I was out and about, I could usually ignore my sleepiness, but at least at one point during the day, I would feel extremely sleepy to where I had to take a nap.

This reminds me of the problems I had when I wasn't taking any psych meds earlier this year. In fact, it was when I was out Wednesday having not taken the Vistaril (thinking I could avoid a nap if I didn't take it), and I got extremely sleepy in the afternoon and was forced to nap while out and about that I was reminded of the sleep problems I wanted to explore earlier this year.

Now I took the Vistaril this morning, and I got sleepy at about 11 AM, but not the almost painful sleepiness like above. I took a nap at 11 AM and woke up at 3 PM. The nap was much more refreshing than in previous days, though I can still feel the sedation from the Vistaril.

Some of my symptoms resemble cataplexy, like those moments of muscle weakness when I am having strong emotions or are under stress. That guy's alarmed reaction (check OP) to a moment of muscle weakness is notable. As I've read, for people who get cataplexy they often describe it as feeling like they are getting weak, especially in the arms and legs. Also, in the last few months, I've collapsed while in a hurry which collapse was preceded by that feeling of weakness.

Of course, I want to get a proper diagnosis, which is what I'm doing. And of course I may have something else. I am aware of that. (I don't know why people feel the need to keep reminding me, when in the OP I mentioned just that. It's annoying, actually.)

EDIT: And to clarify, cataplexy can be alarming to others.