Does anyone else sleep excessively? I slept for 33 hours straight from Friday night to Sunday morning without a break.
This happens periodically and I'm not in pain. I wake to go to the bathroom and maybe drink some water at my bedside, but that's it. I don't have any warning it's going to happen. Fortunately, it happened on a weekend and I didn't miss work or have anything important planned.
Sometimes, I will sleep for 3-4 days at time with the number of hours shortening after each day of sleep.
I think it's so odd and not normal for PsA. I know people are fatigued with PsA and I take narcolepsy med, Nuvigil, everyday and still have these sleeping coma episodes.
Wow Frances! That is quite impressive. I know that you’ve struggled with fatigue but that’s just a whole different level. Have you worked with a sleep specialist at all? Or someone else who would be best for this type of issue?
You're not a teacher are you, by any chance? Last time I slept anything like that long was at the beginning of the long summer vacation when I was teaching. And as PsA crept into the equation, unbeknown to me at the time, I wouldn't really wake up properly for the first 3 weeks, or at least that was how it felt.
I do agree with Stoney, you really need help with this. I should imagine that sleeping that long is disorientating and possibly depressing. How are you when the sleepy phase is over? Does it leave you with more energy? I'm sorry you're dealing with this but there surely has to be some help available in addition to that you're already getting. I hope so.
I see a neurologist and have told him how I sometimes sleep excessively and I've had a sleep study. I don't wake up refreshed. I still had to take my nacolepsy med this morning. Sometimes I sleep for 3-5 days at a time. This was a short episode. Now how am I going to explain this to my new supervisor? It's so bizarre !
This has been going for over 2 years. My neurologist's only advice is to double up on my narcolepsy med - which is difficult to do because it causes debilitating nausea - I have to increase the dose gradually or I'll get terrible nausea.
Sybil, you are correct it can be extremely disorienting and depressing during and after the sleeping episode. When it lasts long, my Mother picks me up (I can't drive) and I stay at her house and she makes sure I have water to drink and just keeps an eye on me. There's nothing else she can do. I wake up only for a little while and use the bathroom and drink some water.
This time it wasn't disorienting or depressing I think because it lasted only about a day. When it last 3-4 days I have horrible dreams, wake up anxious and go back to sleep.
I have ad 24 hr episodes but none longer except when I had terrible migtanes during MTX days. My 24 hr or maybe longer probs come and go but now that I have my thyroid issues pretty much under control they are fewer between. You have ruled out thyroid right? I would assume so if you take narcolepsy meds but thought I would throw that out there anyway.
That is a lot of sleep! It seems like you don't have any satisfactory answer as to how to help this not happen. Are there any specialists you can see other than you're already seeing?
I'm seeing a neurologist for narcolepsy med - I don't know what other specialist I could see??? I could get a second opinion from another neurologist.
nym said:
That is a lot of sleep! It seems like you don't have any satisfactory answer as to how to help this not happen. Are there any specialists you can see other than you're already seeing?
I have a friend with narcolepsy who sees both a neurologist (general neurology) and a sleep specialist. Her main narcolepsy doc is the sleep specialist.
Frances said:
I'm seeing a neurologist for narcolepsy med - I don't know what other specialist I could see??? I could get a second opinion from another neurologist.
nym said:
That is a lot of sleep! It seems like you don't have any satisfactory answer as to how to help this not happen. Are there any specialists you can see other than you're already seeing?
I'm going to try to see a sleep specialist at Johns Hopkins in Baltimore, Maryland. No one can explain my sleep coma episodes.
nym said:
I have a friend with narcolepsy who sees both a neurologist (general neurology) and a sleep specialist. Her main narcolepsy doc is the sleep specialist.
Frances said:
I'm seeing a neurologist for narcolepsy med - I don't know what other specialist I could see??? I could get a second opinion from another neurologist.
nym said:
That is a lot of sleep! It seems like you don't have any satisfactory answer as to how to help this not happen. Are there any specialists you can see other than you're already seeing?
Has anyone ever mentioned hypersomnia to you? It can have several causes, and sounds familiar to your described symptoms. Might be something to research and ask your doc about?
I don't know if I'm quite that bad, but I do have what I call "crushing fatigue". It feels like I've been whacked by the entire bag of sleep sand by a drunk sandman, and I go down fast and hard. I can sleep for days only waking to graze and crash again. It's really frustrating.
Since I'm not working (disability was approved - woot-woot!), I haven't bothered to get it looked at. I don't snore or stop breathing, and I'm not missing work. I do feel guilty for not doing a thing for days on end, but that's the way life is now. I'm not prepared to treat it; I don't need any more meds.
I do sleep for 10 to 12 hours a day. If I don't have to work, I can spend 36 - 40 hours sleeping, only waking to use the toilet or drink some water or juice. Feels like I'm sleeping my life away. My rheumy doesn't know what to think, she believe i'm catching up on lost sleep. I don't have a general practitioner anymore since mine retired and we are lacking doctors in western Canada... no second opinion.
That's exactly how I sleep when I have a hyper-somnia episode. Cimzia has reduced the frequency and my narcolepsy med, Nuvigil, also helps immensely with the daily fatigue and hyper-somnia. There's an article posted on this forum about how to talk to your doctor about fatigue. You may want to read it and then discuss your fatigue symptoms with your doc. That's how I was able to get my doc to address the problem. I had no life until I started taking Nuvigil.
I hope you get some relief soon.
Warmly,
Frances
ShyWarrior said:
I do sleep for 10 to 12 hours a day. If I don't have to work, I can spend 36 - 40 hours sleeping, only waking to use the toilet or drink some water or juice. Feels like I'm sleeping my life away. My rheumy doesn't know what to think, she believe i'm catching up on lost sleep. I don't have a general practitioner anymore since mine retired and we are lacking doctors in western Canada... no second opinion.
Not saying there are easy answers, but if sleep were still a real problem for me I'd want as much sunlight as I could take without burning at all, even if the pattern wasn't seasonal. In fact I think of that as vital anyway.
So glad to hear Cimzia is helping.
Frances said:
I don't have more frequent hypersomnia episodes in the Winter. My new med Cimzia has made them more infrequent. Sybil said:
Is it worse in winter Frances? Wondering about factors such as adequate exposure to natural daylight, did the sleep study consider such things?