Dear friends,

Part of having RSD is this whole issue of insomnia so I thought I would start a thread about what if anything others have been able to do to help with sleeping problems.

I was taken off trazodone last year because it was thought to be causing increased blood pressure and my blood pressure did return to normal. My PM doc switched me to oxazapam 30 mg. at bed time. Generally I sleep well with this but if I try to lower the dose or just don't take it I can't get the deep REM sleep, I toss and turn all night. I have been known to take 60 mg on nights when my rsd is flared badly. I'm concerned about long term effects of taking this medication including addiction. If it is possible I would like to try to find a non pharmacological way to manage this better.

Does anyone here have any tips for improving sleep naturally?

Thanks.

MsL

I'm off all of my meds. I tried Ambien and others and they just didn't seem to help me but I don't have the nightmares I had when I was on the meds.

Have you been checked for sleep apnea? A lot of people seem to have it nowadays. I can't use my oxygen because of the tubes and I can't stand a mask. Tomorrow night I have to sleep with a machine hooked up to check my oxygen. I don't know how it's going to work because I don't sleep anyway.

I get very frustrated with not being able to sleep but it seems so hard to find anything that helps. I do drink warm tea at night. Decaf. Sometimes I drink a cup of hot chocolate.

If your pain levels are really high, it's even harder to sleep.

Hope you find some answers soon.

Ada

Dear Mslday -

A couple of years ago, I was snoring a lot and my wife insisted that I get a sleep study done for sleep apnea, and it was positive. Interesting thing, sleep apnea. Check out, "Inflammation, oxidative stress, and repair capacity of the vascular endothelium in obstructive sleep apnea," Jelic S, et al, Circulation, 2008 Apr 29; 117(17): 2270-8. Here's the abstact:

BACKGROUND: Indirect evidence implicates endothelial dysfunction in the pathogenesis of vascular diseases associated with obstructive sleep apnea (OSA). We investigated directly whether dysfunction and inflammation occur in vivo in the vascular endothelium of patients with OSA. The effects of continuous positive airway pressure (CPAP) therapy on endothelial function and repair capacity were assessed. METHODS AND RESULTS: Thirty-two patients with newly diagnosed OSA and 15 control subjects were studied. Proteins that regulate basal endothelial nitric oxide (NO) production (endothelial NO synthase [eNOS] and phosphorylated eNOS) and inflammation (cyclooxygenase-2 and inducible NOS) and markers of oxidative stress (nitrotyrosine) were quantified by immunofluorescence in freshly harvested venous endothelial cells before and after 4 weeks of CPAP therapy. Vascular reactivity was measured by flow-mediated dilation. Circulating endothelial progenitor cell levels were quantified to assess endothelial repair capacity. Baseline endothelial expression of eNOS and phosphorylated eNOS was reduced by 59% and 94%, respectively, in patients with OSA compared with control subjects. Expression of both nitrotyrosine and cyclooxygenase-2 was 5-fold greater in patients with OSA than in control subjects, whereas inducible NOS expression was 56% greater. Expression of eNOS and phosphorylated eNOS significantly increased, whereas expression of nitrotyrosine, cyclooxygenase-2, and inducible NOS significantly decreased in patients who adhered to CPAP > or = 4 hours daily. Baseline flow-mediated dilation and endothelial progenitor cell levels were lower in patients than in control subjects, and both significantly increased in patients who adhered to CPAP > or = 4 hours daily. CONCLUSIONS: OSA directly affects the vascular endothelium by promoting inflammation and oxidative stress while decreasing NO availability and repair capacity. Effective CPAP therapy is associated with the reversal of these alterations.

PMID: 18413499 [PubMed - indexed for MEDLINE] http://www.ncbi.nlm.nih.gov/sites/entrez

I was first put on a CPAP (continuous positive airway pressure) machine, which I hated, but was later tranfered to a so-called BiPAP machine, with variable pressure on exhalation, which is far easier to tolerate. The downside is that now my wife - who is a very light sleeper - can't stand the sound of the machine, on account of which the snoring may be gone, but I'm in my own bedroom.

Mike

Hi MsL,
I have a natural remedy book that indicates a "cocktail" of Vit. C, Calcium, Magnesium, Zinc and Melatonin (a particular brand or kind has been mentioned here on this forum, but it escapes me at the moment) at bedtime will aid in better sleep. It did used to work for me for several years until my insomnia became chronic. Medicinally, I have been on first Seroquel 25mg at bedtime (with EXCELLENT results.....a WONDERFUL solid 8 hours of sleep with no groggy feeling) and now Elavil at bedtime (with lesser results in being able to stay asleep).

I have the same problem with tossing and turning and waking up at every noise or change in light (even that coming from the phone being on the charger). Ambien and Lunesta do NOTHING for me (which is why they tried me on the "atypical" sleep inducers in the first place).....nor does Klonopin and muscle relaxants alone. Pain pills actually KEEP me awake so I try not to take them close to bedtime.

Mike, my dear husband also has severe sleep apnea and uses a CPAP. The same situation in our home......his snoring kept me awake before the CPAP and now the machine hissing keeps me awake, so he and I have to sleep apart as well. I look forward to him being able to have the surgery to correct the condition in the first place so we can snuggle to sleep again (assuming my sore feet will allow)!!

I am a firm believer in getting plenty of rest at night. I think the lack thereof is a common problem for most of us with RSD and may exacerbate our symptoms and pain levels. I hope you find what works best for you!! Best wishes!!

When Bill was living what we did was get a long oxygen line for his machine and we put it in the dining room so we didn't have to listen to the machine.

Mine has an extra long line but it's sitting in my bedroom unused anyway. I couldn't stand the noise of it either.

I do think they have come out with quieter ones though. A friend of mine had them come and get hers and bring her a less noisier one.

Ada

Thanks all,

Mike that really sucks! I'm sorry to hear you have to sleep alone and with such a noisy machine like that.

My issue with restless sleepless nights is not related to sleep apnea althought the connection to inflammation is a very interesting consideration. I rarely snore, or so I'm told. Generally I do sleep well with the medication it's just that I want to get off the meds. I'm trying to detox my body and get cleaned up. I don't know if I'll ever be able to do that completely but I want to give it a shot. I think it is mainly the RSD as I have never been able to sleep with out the help of medicine since I was diagnosed. Without meds I just can't get that much needed REM sleep that gives one the feeling of being well rested. It could also be caused by perimenopause, my hormones are definitely bouncing around on me right now.

A few weeks back I started to take 3 mg of melatonin daily but it doesn't seem to help, I tried to tapper down the oxazapam and boy was I sorry. I ended up taking the other half at 3:00 am which made me groggy and grumpy the next morning. I don't want to increase the melatonin until I have all my hormones checked. Does anyone else here take melatonin with any success?

MsL

My insomnia comes and goes and mostly it's a problem of falling asleep and do fine if I ever drift off. The major causes seem to be pain and stress but I also have a tremor which is barely perceptible but keeps me awake. This is controlled pretty well by tizanidine but if I use the tens too much then the drug might not be enough.

I'm trying to get off the ~30mg of seroquel I've been using since this has started causing me to bite my mouth and I can't stop it. The seroquel will be hard to cut since it helps with the sleep so much. It also causes halucinations so I really shouldn't be taking it anyway probably. These are all I take regularly for sleep but I take the other medications around my sleep schedule. For instance I try to have the gabapentin at a very low level when I go to bed since it tends to keep me awake.

For typical pain I'll take tylenol 3 and the codeine will knock me out. For Localized RSD pain I take tramadol with acetomeniphen. (of course you can't take this with tylenol 3)(talk to your doctor). I take extra seroquel for minor stress and valium for more "specific" stress.

Keeping to a regular schedule helps. I don't eat within 3 1/2 hours of bedtime and no coffee within 8 hours. I avoid water within 2 hours. I try not to oversleep but when you have insomnia this can be extremely difficult as you need more in the morning. Snoring has been a problem recently but tongue exercises actually help as does propping up the head of the bed a little bit.

It helps to start really winding down an hour or even two before bedtime. Try to get things wrapped up for the day as much as possible so you aren't going over things when you lie down. Surprisingly it seems to help to have some odd question to sleep on; just some conundrum that might not even have a definitive answer.

Hi Msl,

Have you tried Chamomile Tea in the evening? Much Love, Roz

Melatonin may still be your answer. The dose needed varies greatly from person to person, but you will know when you've gone too high as you will get vivid nightmares (my hubby thought a wolf was ripping at his throat). However, backing off at the dose before "the wolf" has really helped him. He also is on CPAP (I try to think of the whooshing as ocean waves-I try.) He also takes Benedryl sometimes when it's late and he doesn't feel sleepy yet, though I am not sure how much this actually helps REM sleep and what the long term issues could be with that.
I take Klonopin at bedtime. It is longer acting than some of the other benzos and I find it helpful. Trazadone gave me akesthesia (sensation like you have to move all over-like full-body restlessness) thus NOT helpful. Refused Seroquel and can't take tricyclics as I am on SSRI's for depression. I do play sleep CDs or nature sounds in the background at night as it helps me relax and meditate before sleep and covers some of the CPAP from hubby.
I also am a total convert to a body pillow. Hubby hates it as it looks like I'm rolling around with a whole other person, but I find that it keeps my body aligned and I toss and turn less when I'm not twisted on my side.
Hope this helps,
Lori Lee

I also have sleeping problems. I am off all of my medications now because they weren't doing a thing for me and I feel that they were making me worse and the side-effects often outweighed the benefits. It was an hard decision to make and I went through a LOT of nasty withdrawal symptoms but I DO feel better now that I am off them - I still have LOTS of pain and fatigue but I don't have to deal with some of the other side-effects that meds throw at you!!!

I have tried almost everything to help me sleep and nothing has worked really. My sleeping is a little better than it was now but it takes a lot for me to get to sleep - it seems as though I either can't sleep at all or I am sleeping too much and there is no middle ground!!!!! When I was first diagnosed with RSD, my PM Doctor put me on Amitriptyline to try and help me sleep and it didn't help me at all. I had a nasty side effect from the Amitriptyline and that was the drug that caused my RSD to spread to my right arm.

I have tried lots of meds for sleeping but I think Phenagon was probably the only one that helped me a little. It is a natural sleeping med that you can get over the counter and it made me drift off to sleep a bit although it would take about 5 hours at least for me to fall asleep!!!!

My grandads wife also suggested that on a night, I take a hot bath and listen to some music and have a lavender tea to drink and read a book as that can help. I tried it and it didn't really help for me but maybe it would work for some of you?? I don't think my grandad and his wife really know how bad the pain is and the fact that I can't get in the bath that much because of pain but it was nice of them to try and help!!

I really hope you all find something that will help you soon as I know how frustrating it is not being able to sleep!! You're all in my thoughts!!!!