Excessive Sleepiness - at what point is it too much?

[Obi-Wan Pinobi]

I'm asking this question for DW Lauri. Before I get into the details, let me assure you that she HAS spoken to both of her main doctors (PCP and Rheumatologist) about this last month and they aren't too concerned - but it has started to really bother her.

Over the last month or two, Lauri has had a hard time with excessive sleeping.

She's always had an occasional spell where she will literally sleep through an entire weekend and her doctors are okay with it because they said she pushes herself so hard that it's her body's way of catching up. (long story - she has an autoimmune disease and she puts herself through hell and back on a daily basis)

But it has gotten out of hand lately. She can wake up in the morning IF she has to for work. BUT, if she isn't working that day, she literally cannot open her eyes. She will sleep straight through the day - never waking up for anything, meals etc. It's like her body turns off because she won't even have to go to the bathroom for almost 24 hours.

She's had the last half a week off (well, 2/3rds) and she recorded her sleep time. We figured the average sleep time is 8 hours a day so that is 56 hours a week. Keep in mind that she did have to work 2 days this week so two were halfway normal sleep days, Lauri has slept 110.5 hours in one week.

At what point do you tell the doctor that you DON'T think it's your body trying to recoup or the medicine you are taking? I know she is literally exhausted on a daily basis when she works.. but should I worry about this? What could cause this outside of what the doctors are saying? I asked about her thyroid and she said her tests always come back negative.

I could understand when it was happening on an every now and then basis, as her body was trying to recoup - but 110 hours in one week where she was forced to get out of bed at 7am on 2 of those days?

 

[MsLeFever]

no ideas here - how long has this been going on?


{{{{Lauri}}}}

 

[Obi-Wan Pinobi]

no ideas here - how long has this been going on?


{{{{Lauri}}}}

The occasional bouts that would last a day or two have been going on for a few years. It's only been I think about 2-3 months since she started sleeping through every day she has off from work. She really thought having 5 days off in a row would give her time to do things, but she ended up sleeping until 6pm each day and then fell back to sleep several hours later.

 

[safetymom]

Sounds like you have some information taht needs to be shared with the doctor. My late husband was put on a drug that made him sleep all the time. The scary part was he would drive home from work and immediately go to sleep. He would sleep until it was time to get up in the morning and it was real hard to get him to wake up. When the doctor switched his one medicine he didn't have that problem any more.

 

[MAKmom]

Sometimes the body sleeps like this when the mind needs the rest. Do you guys meditate?

 

[Laurajean1014]

This is a serious condition, not to mention that it is not giving her much of a life.

She may have depression, her meds could be doing this or she could have a very serious problem that the drs. are unaware of.

What type of drs. is she seeing?

When she wakes, does she feel relieved? Enriched? Ready to go?

 

[Mickey527]

Matt,
I think of Lauri and you often but I don't post much anymore because of the nerve damage in my hands thanks to the chemo. I can't type fast and I make alot of mistakes.
My neurologist has diagnosd me with Chronic Fatigue. He said that there is really no tests that can be done they just listen to the symptoms and make the diagnosis. He did say that people with autoimmune problems seem to be the highest and women are diagnosed more than men.
I could sleep most of the day into the night if I have the chance. I actually have to force myself to get up out of bed to even go to the bathroom, sometimes I just hold it rather than get up. And when I do get up I eat bfst and read the paper and I am wiped out. I have to come up to bed again and lie down even if I don't sleep. Most of the time I turn on tv and nod off though. My Dr has given me Ambien SR to take at night so I can get a full nights sleep instead of the chopped sleep I usually get. It helps a little but I am still tired all day. I also take an anti depressant now because along with chronic fatigue comes depression because of the change in lifestyle.
Some of the other symptoms of Chronic Fatigue are extreme tiredness even without exertion, mental lapses, joint pain without swelling, and headaches. There are others too but I can't remember them right now.
I am sure the Dr will make the diagnosis once Lauri tells him the symptoms.
I admire how Lauri still is working. I had to go on disability in Feb beause of the fatigue and the neuropathy in my hands and feet. She just won't allow herself to take the time off that she deserves.
I hope the Dr can give her something to help her symptoms a little. Peggie

 

[Pop Daddy]

find another dooctor, that will listen to you

 

[Fan2CSkr]

Since she has an autoimmune disease it is very possible she now has another. Some autoimmune diseases share similar symptoms. Her sleeping is excessive and you need to discuss this with her Doctors.

So many factors to consider, medication, depression, pain. Have another full thyroid panel done since levels taken more than 6 weeks ago can be totally different now.

Have you heard of Provigil (Modafinil)? This was a miracle for me when I had similar symptoms.

I hope you can get to the bottom of this quickly so she can start feeling better!

 

[UnderTheMistletoe]

Firstly, out to both of you.

Have they checked her for mononucleosis? I had a terrible bout with it my senior year and highschool. I missed 3 months of school- and they caught it about 2 months after it began.

I ask becuase this is how I was during and after the Mono- I would sleep for 23 hours at a time. I would wake up just long enough to go to the bathroom and have something small to eat. I was very close to hospitalization simply becuase I was getting dehydrated. This concerns me becuase you said Lauri isn't drinking much. (ETA: An inference because you said she's not rousing to go to the bathroom)

Post-mono when I returned to school, it was incredibly difficult. I would hit days that I just couldn't go or do anything further. I was diagnosed with chronic fatigue. Even now, many years later, I still fight CFS. I will hit a point tha I just go pale as a ghost and just collapse and sleep fr days on end.

Call the physician and ask for an appointment. Tell them that something is not right. When you're body and intuition is telling you something, listen. It's usually screaming at you. You're gut is telling you something with this and you must listen. You must. Don't let them brush you off and if they do, find a second and third opinion.

P&PD
xoxo

 

[Obi-Wan Pinobi]

First - (((((((((((Peggy)))))))))))) It's so good to see you! I hope you are doing well. I know both Lauri and I miss seeing you every year at Epcot.

Let me see if I can answer questions raised -

Lauri is being treated for depression and has been since she was diagnosed with her AI disease because the chronic pain was getting to her

Her meds are very closely regulated by both doctors on a monthly basis, so they keep on top of things and there hasn't been a huge shift in her meds in the past few months.

Her main doctors are her Primary Care Physician and her Rheumatologist - like I said, she has standing appointments with them pretty much monthly.

Lauri has brought this up to both doctors on more than one occasion. Neither of them were the least bit surprised. Both of them think she pushes herself to the point of exhaustion. Most people at her stage in her illness are not working, no less working full time on their feet most of the day. But that's Lauri - she's stubborn

When she wakes up knowing she has to go to work, she feels indifferent. She said it feels like her body is just turning on and off like an appliance now - not that normal waking up tired or waking up feeling refreshed. She said she just opens her eyes and goes.

She doesn't sleep restlessly - she is sleeping through the night and sleeping heavy. She can sleep through any noise.

And to the poster that said she doesn't have much of a life - you are right. She knows that and it is seriously upsetting her. Her life is get up, go to work, come home, go straight to bed. On her day off it has become a sleep marathon. We are planning to see a movie on Monday, but I get the feeling she might not wake up until it's too late. And if I try to wake her up from one of these marathons she gets pretty irate and tells me to leave her alone and goes right back into sleep.

I'm with you guys.. it's time to make sure the doctors know this is beyond her body recoupping from a long week at work.

 

[Lachesis00]

Have them check her iron levels. My levels are fine but how it works in the body is not. Iron pills did not work for me. I am not doing iron transfusions.

I too would come home from work and sleep 4-6 hours, get up long enough to give my son his meds and maybe eat and then sleep until the next morning.

My husband has noticed a huge difference. I will go in for #4 of 10 to start on Wednesday.

 

[geetey]

As a marathon sleeper, a thought occurred to me. Could this be a seasonal thing?

The reason I ask is because I have MS, which is also an autoimmune disease. If I am lucky, I am up @ 10-12 hours a day. If no one bothered me, I know I would be sleeping more than that - probably closer to 14-16 hours a day. Even before I was diagnosed, I could sleep for 24 hours - if I was allowed to. For me, the heat and humidity of the summer (even though I am indoors all of the time) WIPE me out. If I manage a trip to the grocery store, I am too tired to cook anything after I get home and get it unpacked. Dumb MS.

When I have spoken with my Dr, an MS specialist, she is also not concerned. For me, these sleepy spells seem to go in waves. I will be exhausted for 4-6 weeks. My doctor says if my body is craving sleep so much, just give in and sleep - eventually I will catch up. Since this has been going on for about 2 years, I guess she is right. I am also getting better at predicting when 'the sleep' is coming or if some event/weather is going to affect me. Besides, I would rather sleep than take another med.

Definitely bring up your concerns with her doctors. It does sound like she is being monitored very closely. I know with my meds, I get checked all of the time. Good luck to you both! I truly hope this is just a sleepy spell and Lauri will feel better soon. Hugs to both of you.

 

[Obi-Wan Pinobi]

As a marathon sleeper, a thought occurred to me. Could this be a seasonal thing?

The reason I ask is because I have MS, which is also an autoimmune disease. If I am lucky, I am up @ 10-12 hours a day. If no one bothered me, I know I would be sleeping more than that - probably closer to 14-16 hours a day. Even before I was diagnosed, I could sleep for 24 hours - if I was allowed to. For me, the heat and humidity of the summer (even though I am indoors all of the time) WIPE me out. If I manage a trip to the grocery store, I am too tired to cook anything after I get home and get it unpacked. Dumb MS.

When I have spoken with my Dr, an MS specialist, she is also not concerned. For me, these sleepy spells seem to go in waves. I will be exhausted for 4-6 weeks. My doctor says if my body is craving sleep so much, just give in and sleep - eventually I will catch up. Since this has been going on for about 2 years, I guess she is right. I am also getting better at predicting when 'the sleep' is coming or if some event/weather is going to affect me. Besides, I would rather sleep than take another med.

Definitely bring up your concerns with her doctors. It does sound like she is being monitored very closely. I know with my meds, I get checked all of the time. Good luck to you both! I truly hope this is just a sleepy spell and Lauri will feel better soon. Hugs to both of you.

Geetey, you sound like you are about in the same situation as Lauri - right down to the doctors saying if your body wants the sleep, give it to it. Thanks for your post, I'm sure she will feel better reading it and knowing that there is another marathon sleeper out there with doctors telling them to let it happen.

 

[YourMajesty]

Wow, that is a long time to sleep. The part about not even eating or getting up to use the bathroom does not sound normal. It does sound like she works very hard. I hope they stay on top of the sleeping issues. I would keep a log and also add when she eats etc for the Dr. Just send her some good wishes...she was very kind and thoughtful in responding to a question I had about chronic pain and medications.

 

[Simba's Mom]

This may seem strange, but has she been checked for depression? That was my problem 6 years ago when I could barely get out of bed. And if I did, I couldn't stay out of bed for more than an hour. After a week in the hospital and every test they could do in that week (3 MRIs, spinal tap, EEG, blood work, etc.), antidepressants did it. And no, I wasn't at all depressed about anything (except that I was always tired-that got to be a bummer!) I was shocked when they diagnosed me with Major Depression-everything in my life was fine. Wierd, huh?

 

[lowie]

could she be anemic? hypothyroid? depressed? i think she may need a 2nd or 3rd opinion.

 

[Wishing on a star]

Simba's Mom,

Your story about the antidepressants is interesting. I have some health issues, and sometimes suffer from Chronic Fatigue. Since I have Hashimoto's (autimmune thyroid) I know that Chronic Fatigue is related and linked to this. As other posters here have pointed out. But, I am interested to hear about the possible depression. In my opinion, dealing with Chronic Fatigue, along with all of the other demands and stresses in our lives, is enough cause depression.

Did you ever discover a cause or factor for any depression?
Do you continue to take antidepressants?
What type of meds do/did you take?
Have you identified any other physical issues?

You can PM me if you wish.

Thanks!

 

[geetey]

Check Matthew's post. He says that Lauri is already being treated for depression because of her chronic pain. I know I am carefully screened for depression at each and every visit, because a side effect of my main medication is depression.

Big hug to Lauri, Matthew, and to yourself. I know it must be SO hard to live with a sleeper. I feel bad for my kids especially. There was a bout this winter, where I got up at 6:30 am, got the kids ready for school/lunches etc, came home, ate some breakfast, then fell asleep. Yep - by 8:30 am, I was beyond exhausted and would sleep until 1:30-2 pm, when I would drag myself out of bed, go pick up the kids from school, typically fall back asleep while they were working on their homework. They would wake me up to make some dinner, eat, bedtime routine, and back to sleep for me. I feel awful for my kids when I get into this state but there isn't a whole lot I can do about it. My body *needs* the sleep.

I have chosen not to go this route, but you can tell Lauri that there are MS patients on the MS boards that claim to live on caffeine pills to have enough energy to get through their work day. I don't want a racing heart and jittery hands, so no caffeine pills for me. Let her know she isn't alone and she can PM me anytime. Of course, I might be sleeping......

 

[Obi-Wan Pinobi]

I have chosen not to go this route, but you can tell Lauri that there are MS patients on the MS boards that claim to live on caffeine pills to have enough energy to get through their work day. I don't want a racing heart and jittery hands, so no caffeine pills for me. Let her know she isn't alone and she can PM me anytime. Of course, I might be sleeping......

geetey - Lauri's Rhuematologist has tried giving her amphetamine salts to try to give her more energy but after a couple of days of it, Lauri wanted nothing to do with them. They made her heart race like it was going to beat out of her chest and she would have spells where she would just shake. I know people abuse those things to get a high, and after seeing what they did to Lauri, I don't know how people could "want" that reaction.

About the depression questions people are asking - Lauri's primary care physician is closely monitoring her monthly on this. He's a great man who will think nothing of sitting in the examining room and talking to her for an hour to try to help her find the best way to treat what's going on. It helps that he is one of the rare PCPs that actually is versed in Lauri's disease. It's so rare, that most doctors not in the Rhuematology field have never heard of it, and the strain she has is so rare on top of that that there are some Rhuemy's that are clueless on it. Anyway, her doctor has been great in researching her background and prescribing her a mix of medications based not only on her needs but on her family history with her siblings. Lauri has said that on the depression front, she feels better than she ever has in the past 10 yrs since the first episode of her disease.

I must say, I do feel a lot better that Lauri's doctors response to the sleeping is very similar to geetey's, especially since the way you described the constant sleep sounds like her. I'm not going to totally ignore the sleep problems and I'm sure Lauri will request to be retested on a few things - but I feel a lot better knowing it's not an unusual response with a chronic Autoimmune disease.

Thanks everyone