Sleepwalking Anyone?
 

This has become a bit of a worrying habit for me and I wondering if it may be related/caused by either my CRPS or by the MS Contin I take (which is 60mg a day at the moment). The first instance of sleepwalking happened when I was at 30mg a day and that was around 3 weeks ago. It may have happened between then and now but these ones I know about for sure, as there was proof of them the next mornings.

Each time it has happened I did three or four worrying things in that night, not just one. For instance, on the first night,I turned the air-conditioning on in the middle of the night when the temperature was already really cold; I boiled the jug numerous times to make 6 cups of coffee; and I woke up wearing clothes that not only did I NOT go to sleep wearing, but they had been in a huge pile of clothes in the laundry room and it would have been almost impossible for me to find them without being awake.

The second time, last night, I boiled the jug twice and poured all the boiling hot water into a bowl of popcorn; my daughter came out of her room in the night to find me holding a box of chocolates and then hiding them from her, like I had been sneaking them even though I know for a fact the box of chocolates was already empty (Matt ate the last chocolate the night before); and when she told me she was going to chuck and needed a chuck bucket, I mumbled something then went back to bed, leaving her in the lounge on her own.

The full details are on this page of my blog: http://thesixofus.wordpress.com/2009...alking-antics/ and there's a link on that page to the first time it happened.

The worrying things with last night's situation is that I boiled the kettle/jug two times and poured it all into a big bowl and I could have easily poured it onto my feet instead and suffered major burns, plus I ignored my daughter when she told me she was going to chuck- which is something I never do, normally if the kids wake me up in the night I'm 100% awake straight away.

The meds I'm on are MS Contin, baclofen and endep. I've been on the baclofen and endep pretty much straight for years. I've been at this dose of MS Contin for about a week, and before that I was on the dose of 30mg for about 3 weeks. But I've been on MS Contin a few times over the years, at varying doses for over 6 months each time, and have never had this happen.

I've lived with insomnia as a part of my RSD for years, averaging between 3-5hours sleep most nights, and I know that's a "symptom" of my RSD, but the sleepwalking is a new thing.

Does anyone else sleepwalk? Does anyone have any insight as to why this keeps happening?

I see my doctor next Thursday and will discuss it with her then but I'm feeling very worried about this as I don't know why it's happening and whether it'll happen again.

Any thoughts on this would be great :confused:

x Kate

Sleep walking
 

I dont know much about sleep walking but one night I got up and was trying to wake myself but I couldnt but I think I just kept falling back in bad- it was so weird and scary. Definatley talk to your doc ASAP. Maybe there is a way to lock yourself in your room or have an alarm go off when you open your door? Just thinking out loud

Deb

Wow, this sounds serious. I think you need to call your doctor as soon as possible. You could hurt yourself or your children. Deb has a great temporary fix to place an alarm on your door, BUT, CALL your doctor in the morning. Be safe.

Sandy

I've just been reading about sleepwalking in general (as I can't really find it having any direct link to RSD or MS Contin) but I've read that sleepwalking is an autonomic dysfunction and it affects epileptics more than others- so those factors may have some relevance as to why I'm doing this.

Thanks for the comments already. I will try and get a doctors appointment for tomorrow. xx

Kate,
If you can't get an appointment, at least a phone call, huh?
Many of us react differently to higher doses of a "combination" of meds!
Maybe that's it.
Get the message in to the doctor's office in the AM, then, if he can't get you in, he'll be able to call, and tell you what to back off on...

If you have "No Memory" of this, it must've been scary for your daughter too!

Just last month, my doctor checked off a little box for me, it was like "post traumatic epilepsy".. I don't know why. I asked him about it this month, and he didn't check it off.
But, I've been "biting" the left side of my tongue lately.
(I've no clue why?)

Our bodies can go nutzo with something like this, and who really does know?

So, I ask you to simply be careful!

Be sure all lighter's / match's are AWAY when you go to bed!
Alarming the door is a good idea!

I wish you the best, and, being overly careful, will get you there!


Pete

Maybe go see a neurologist. S/he might offer to do a sleep study to discover why it is you sleepwalk. And you're right, the boiling water... that's not safe at all. It might not have anything to do with the medication you are taking. Do any of these meds state sleepwalking as a possible side-effect?

Don't forget to mention it Thursday!
Keep us posted!

Hi Marleen,

I spent some time yesterday checking if it's a medication thing. I can't find sleepwalking as a side effect/adverse reaction/problem that comes from taking any of my medications. And I did an interaction checker to see if it could be from the mix of drugs I take, but nothing came up on that, either. So I'll talk to my doctor about it and see if I need a referral to a neurologist or sleep clinic etc.

I was hoping that after I posted this in here, I'd get some "yeah, that happens to me, it's related to our rsd" replies but I didn't, so that has thrown me, lol.

Hopefully I can get on top of this soon and it doesn't happen again!

Hi

I went through a spell sleepwalking and talking when I first started Neurontin. It scared the pants off of me! I weaned myself off finally and it stopped. Some of these meds are horrible! I have memory problems badly with my meds. I felt like I lost my mind (literally) when I was on Neurontin. Be safe and good luck!

Me again :p

I just thought I'd share something with you that will make you laugh... well, sort of

While helping to cook dinner last night, I poured boiling water out of a saucepan (that had the cooked potatoes in that we were going to mash) and into the kitchen sink, using a flat strainer thing to keep the potatoes in place. It's like a flat plastic thing with holes all over it and a ledge at one side that you put over the outside rim of the saucepan so it stays where you want it to stay. When you tip the saucepan up, the water goes through the holes but the potatoes stay in the pan. I thought it would be easier to use that than a normal sieve :o

Unfortunately, though, it didn't do its job. The strainer thing didn't stay in place and it slipped up, causing heaps of water came out from the gap under it, with the water running straight over my RSD affected fingers. :eek: :eek:

I dropped the saucepan in the sink and jumped all over the place, it hurt so much. I was able to put my fingers under cold water for ages (can't ice them but am ok with cold water when it's absolutely necessary) and thankfully that limited any blisters. Pain levels went through the roof of course, but thankfully it's not so bad now, over 24 hours later. There's a damaged area where it's numb and shiny and not very nice, and my whole hand has swollen up like a balloon, but I'm not as bad today as I thought I would be, so hopefully it'll heal quickly.

I know that's not really funny, but the funny part is how ironic it is-

I can pour boiling-hot water heaps of times without any problems when I'm sleepwalking, but I can't do it safely when I'm awake! :rolleyes: :D

This is so not funny... :( I'm sorry this happened.

Please keep an eye on how it progresses and if need be, go to a doctor and show him/her the burned area. Maybe you could put some ointment on it, something soothing that's used for burns, if you have that, otherwise (if the burns aren't too bad) some aloe vera gel might help soothe things (used for sunburns).

Thanks Marleen :)

It's actually healing a lot faster than I expected, I can even use that finger normally now, which is excellent. The swelling isn't constant anymore either.
I've been very lucky, it could have been a lot worse.

And as an added bonus, this gets me out of cooking any dinners for a while ;)

Cake,
back to the point,
It's the sleepwalking,
I'm starting to wonder about myself (always have a little bit)...

But, I haven't slept correctly for a WEEK!
I either sleep all day and night, or all day, and Not at night, for instance, no sleep last night, at all!
But, slept most of yesterday.
(Thanksgiving and Christmas are two days I'd rather spend alone)...

Anyway,
it's not much different than normal.
And, I can't figure it out.
I'm guessing that what I should do is to move to alaska, or (Siberia) get meself a harnes made, and get some excercise pulling sleds...
At least the dogs might like me!

grrrrRRRR.

Anyhows, I just don't know the answer!

How long has this been going on with you, now?
For me, it seems to go back to '83.
That's too long a time, especially when there's no cure in sight.

Be well!
and
Have Fun!


Pete
asb

Hi Kate, I know this is very scary to you and your daughter. I had the reverse-my daughter would sleep walk. She was only maybe 4 years old. One night I caught her going out the front door. She was a very deep sleeper, really from birth on. She would sleep 10 hrs straight away. We both are very deep sleepers and need more sleep than the average person. When she was in school, some Mondays I would keep her home to sleep in-she would sleep 13 hours. Our first trip to Europe, when we got there, I slept 16 hours straight. (All night plane trip) From then on, I booked a trip 2-3 days early just so we could sleep and get our bodies used to time zone change. That's when we would meet up with a group for tours.
I'm so glad you are calling your Dr. and locking your bedroom door. It's very scary about the hot water and so many possibilities of something harmful happening to you or your daughter.
Please let us know what your Dr. says and how things are going. Your friend, loretta with soft hugs:grouphug:

Hi Kate,

I've recently had one sleepwalking episode, and mostly just episodes of passing out randomly (almost like narcolepsy)... I was hospitalized for a multiple sclerosis exacerbation recently and I am on high doses of oxycontin, zanaflex, neurontin and Cymbalta. Oxycontin is very similar to your MsContin and Zanaflex is very similar to Baclofen. Endep or Amitriptyline acts primarily as a serotonin-norepinephrine reuptake inhibitor, which Cymbalta does too. So I wonder if the combination of all these drugs does this?

At first I tried cutting out the Zanaflex yesterday, but hadn't realized I also cut out the Neurontin and Cymbalta on accident. After I took the Neurontin and Cymbalta yesterday, I noticed that I started getting unreasonably drowsy for 4 o'clock in the afternoon. So, I don't think the opiate and the muscle relaxer are doing it to me alone. Today, I'm not taking the neurontin (I don't think it's helping anyways), we'll see where that goes.

I took the Cymbalta today. I'm crazy, so don't try this at home :)

Definitely talk to your doctor. I just left a message for my neurologist and I see him on Monday. This stuff is really scary. I do admire your sense of humour though. We have to have one when faced with these chronic, incurable diseases.

Cheers,

Charley

Hi Kate!
I think that it is important to remember that a lot of people do sleepwalk, and usually it has nothing to do with meds or even a condition. It's kind of normal. (Although I would hide your pots and pans!) But, a lot of the times it can be exacerbated by stress. So I wonder if something was really stressing you out around the time that you started doing this?

My boyfriend sleep walks and talks in his sleep when he's stressed out a lot. He does this thing where he literally jumps straight up so that he's standing on the bed. All of the sudden he goes from laying down to standing up on the bed. I have problems sleeping, so I'll be up reading, and all of the sudden he's standing there. I'll just talk him down, so to speak and he goes right back to sleep. One of my cousins, who shall not be named, used to go downstairs when she was little, pee in the closet and then go back to bed.

So try to think about the stress angle- it doesn't sound like much, but stress can do crazy things to a person! Hope this helps a bit. Or at least makes you laugh!

Lynns

Sleepwalking
 

Hi, I am new to this forum. I have crps . I was reading some posts and I came across someone who was sleepwalking. I have been having this problem for a few months. Last night was severe. I woke up just as I began to bash my head into the bathroom wall! Scared the hell out of me. A while later I had a knife in my hand and I was cutting my finger. Please believe that I have always been a normal person. What the hell is happening to me?

I have also been exhibiting some symptoms of narcolepsy, like falling asleep sitting up or standing.
Does anyone know if this is related to crps. It has to be. I was a normal person once. Then a student dropped a chair on my foot last October and I have become this crazy person. They have to be related?
ANY THOUGHTS?

That has to be very frightening, Lanie.

I would think it might be due to medications.

Ambien will do this.

Neurontin sometimes in susceptible people. But not everyone.

Opiates rarely but possible.

OK Mrs. D...

Now I am worried about this, my Lindsay was just started on Ambian CR...do you have a link I can read? I better put a bell on her door.


Lanie, what meds are you taking now?

Ambien is well known for causing eating while asleep, driving cars, walking around. There has even been an attempt to blame it on a murder...even. (that was extreme and failed).

But it does affect something in our consciousness controlling areas of the brain.

http://www.lawyerseek.com/Practice/P...1/Ambien-P121/

It doesn't do this in everyone however. Just some.

Thank you Mrs D...for the information. Wow, it is amazing how they prescribe these drugs and never let you know. Lindsay's pm would not prescribe her a sleeping pill because she said she had a patient drive to the grocery store and buy 12 loaves of bread, also one overdosed on their pain meds. Thought it was weird. She was against it, but, neurologist at the hospital put her on it. Does lunesta also cause the same affects?

Thank you for sending the link. I appreciate your time.

Sandy

I haven't taken Ambien in months. Lyrica and Neurontin were taken off the table very early on due to severe negative side effects. At the direction of my doctor, I am currently reducing the cymbalta by 1/3, but that will take a couple of weeks to take effect. Other meds include Fentanyl, oxycodone, hydrocodone.

I don't have any problems falling asleep (as I'm always tired), but it is not restful sleep. I can transition from full consciousness to REM sleep in a few seconds, coming out of it just as quickly. The symptoms are classic narcolepsy, but so far none of the doctors have mentioned anything about a correlation between narcolepsy and CRPS. I have heard of a link between RLS (restless leg syndrome) and narcolepsy, and with CRPS in both feet and both hands, it certainly makes sense that the two are related.

Lanie

Hi Kate, That is scary-sleepwalking, my little girl did it when she was 3-4. Found her going out the front door one night. We safety proofed the house and she grew out of it. I know she was a very sound sleeper.
I'm sure you know RSD is an autonomic condition. Perhaps that is the link. I'm glad you are getting to Dr. They may put you in sleep disorder clinic overnight and check it out.
Let us know what you find out. That was what I was afraid of, burning yourself or someone. And your daughter being sick-I'm sure you'll be given good direction to keep you and your family safe.
Your friend, loretta with big hugs:grouphug:

OK Kate,
I'll own up.
This does happen to me, and seems to be getting worse. I thought I could ignore it, but I suppose I shouldn't.

I have no memory of it in the AM, except for the 'evidence'.
Since I live alone.... I can't suspect anyone else.

I think I can get up and cook, then, I had a bad time with email during the night, (and when taking 'Keppra', I could get short, or curt in these emails.) Thank God for understanding people!!
Ali here, gave me that tip on the 'Keppra'.

My doctor has me dx's as 'transomnnia'.
I've been sleep studied,
got a CPap machine, and and Oxygen concentrator.

I think I've tied this into it, If I forget and fall asleep w/o the CPap, that is when I'm more likely to do this sleep walking / cooking / typing....

While I believe it's due to the RSD somewhat, I also have a brain injury. That's when the real trouble started.
Stress, is a detriment again, with this.

Kate, you're in my thoughts, and prayers, along with your family...


Pete
asb

I was taken off Ambien completely last week due to sleep walking. Was taking 5mg for about 6 months then psychiatrist upped it to 10mg about a month ago. I was tired at night but was always getting up to do something. I took our dog for a walk in the middle of the night, trimmed some trees and did yard work - activities I normally do not do at 11PM. When I finally figured out something was wrong was when I thanked my husband for taking down some vines that had been growing wildly. He said he didn't do it. I do not remember doing it. I guess I could call it sleep landscaping.

Have been on sleeping pills (Lunesta and Ambien) for about 7 years. Needless to say I'm having a heck of a time getting any sleep now. Fortunately I see the psychiatrist tomorrow.