Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 11-22-2009, 10:56 PM #1
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Default 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

x Kate
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Old 11-22-2009, 11:16 PM #2
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Default 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

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Old 11-22-2009, 11:44 PM #3
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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


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Originally Posted by Cake View Post
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

x Kate
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Old 11-23-2009, 12:23 AM #4
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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
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Old 11-23-2009, 12:56 AM #5
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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
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Old 11-23-2009, 12:39 PM #6
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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!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 11-23-2009, 05:06 PM #7
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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!
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Old 11-23-2009, 06:13 PM #8
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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!
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Old 11-25-2009, 05:44 AM #9
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Me again

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

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.

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!
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Old 11-25-2009, 01:47 PM #10
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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).
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- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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