Sleeping Problems
 

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

Hi 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.:icon_sad:

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!!

Hi Mominpain,
 

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!!!!:hug:

I am interested in this information as well. I figure, heck, I have enough meds in my system I should be sleeping but don't.

Thanks for the suggestions so far.

Good morning all!

Roz, I do have an herbal tea in the evening and it has chamomile in it, it's called Dreamland. I have only a little caffeine from green tea in the mornings. I'm thinking of stopping that but I keep reading the caffeine in green tea is not a bad caffeine, if there is such a thing?

I do sleep better after a hot bath with epson salts and yesterday I added a couple of drops of lavender oil to the water. Then I put a drop on my pillow. That was heaven!

I went to my local health store yesterday and the lady there suggested that I take a tablespoon of liquid calcium and magnesium just before bedtime. This makes sense to me as I had read that this can be helpful for sleep so I bought some and tried it last night. I slept like a rock but I also took my normal dose of oxazapam. I guess I'm afraid to go without it but will have to try to ween off it again. Lori, perhaps I will increase the melatonin and see how that works. I too love the body pillow. I like the idea of playing some relaxation cd's and will give that a try too.

Thanks so much for sharing your experiences, thoughts and suggestions, you are all so caring and helpful.

Warm wishes for a great day.

MsL.

Hi. I can really relate to this. I had sleep issues before my rsd and with it I can go nights without any rest. That is not good for the physical pain and also makes it harder for me to cope mentally. Anyhow I have tried many meds for sleep and still am up. A few things that were suggested to me is to listen to music or relaxation tapes. Watch the caffeine but having a small snack balanced in all nutrients can help keep blood levels even. For me in addition to my pain being high in the night I have extreme anxiety with my thoughts and body so am trying to work on ways to cope with that since meds don't do the job. Hope you get some rest and find something that works and for everyone else too

Further to discussion on sleeping problems I thought I would share this article I found on Life Extension.org

While the article does not speak directly to RSD, there is enough research out there to suggest that those of us who suffer from RSD have a chronic inflammation. For those interested in reading more on Chronic Inflammation here is a link to this article. http://www.lef.org/protocols/prtcl-146.shtml

Staying on topic of the thread here is the link to the article on Life Extension's Insomnia Protocol http://www.lef.org/protocols/lifesty...nsomnia_01.htm

MsL

This is one of my biggest issues too. Caused by both pain and insomnia.

If I do sleep, it's broken and only for a max of about 3-4 hours a night. But I have to change position every few minutes as the pain builds up, so I never get a good solid sleep. Lately most nights I've been awake until 5-6am, which is just horrible when all four kids wake up at 7.30! Last week I didn't get to sleep until after 7am, so only managed half an hour sleep that whole night. :mad: I don't get to catch up during the day so you'd think I'd sleep well the next night, but I don't. It'll be the same thing all over again.

I have sleeping tablets here (Temaze) that work great if I take them at around 10pm at night, but I don't like doing that very often as I don't want to build up a tolerance or dependance on them.

Other than that I try having a shower before bed, or I read, I listen to mellow music on my ipod in bed, I try using different types of pillows and foot rests, I turn the tv on a boring channel and hope the guys voice will send me to sleep ;) or I go and sleep on the lounge... nothing works.

It's not like I'm wide awake and doing housework all night, my body is exhausted and I'm WANTING to be asleep, I just can't. It's so frustrating. :mad:

But I did use to take "calcium and magnesium" tablets but haven't in months, so after reading your posts I'm thinking that might be worth a go. :p I'll let you know if it helps. Any other tips would be great! I love sleeping and I miss it!

x Kate

cake
like you i do the same thing waiting to sleep and next thing i know its 4-5 kids get up at 615 . but i do try to take my lunesta but even then sometimes i still dont sleep im weary of the mag and calicam as i have kidney problems and thats all i need is a nother kidney infection

carrie

I take calcium and magnesium for stronger bones and I heard that magnesium helps with muscle or joint function but make sure to get the kind that can be absorbed and also with calcium you need vitamin d.

Hi all,
 

What I seem to notice that keeps me away at night also it the sounds, smells and feeling of things. They seem overwhelming at times.

My kids got me a really nice mattress cover for Christmas because my bed felt too hard. Now it feels like I am sinking into it too much.

Smells, if there is something smelling strong in my house I can smell it even more it seems. I can't cook beans in the crockpot at night because the smell seems overwhelming.

Sometimes the smell of my perfume bottles are overwhelming at night. I have to get up and move them.

Simple noises sound like they are magified.

I was just wondering if this is something some of you might be dealing with that adds to not being able to sleep.

Ada

I agree, Ada, that those things definitely don't help.

That's why I get out of our bed and go and sleep on the lounge. My hubby tends to snore and even the slightest noise or movement from him keeps me awake. Or if the fan is on in our ensuite bathroom. Or if I can hear the dishwasher. I've had times where I've slept in one of my kids' beds (if they're at a sleepover- their beds are so much better than the lounge!) but they have a ticking wall clock and although I take the clock out into another room (and often put a cushion on top of it! ;) ) I can still hear it, so I end up taking the battery out. It's like I can hear it LOUDER even though I've taken it out of the room. :rolleyes:

I'm not sure if this is connected to the rsd. I reckon it's more a general insomnia issue- ie people with insomnia but NOT rsd would have the same problem- but it definitely doesn't help when we're already struggling to sleep at night.

Daniella-thanks for the info on the Vitamin D. I go thru phases with my vitamins. I get so sick of taking handfuls of tablets every morning and night so tend to get slacker with my vitamins and just take my prescription meds, but I know that the vitamins are just as important so I need to re-introduce them all into my bedtime routine.

x Kate

Hi Kate,
 

Funny you mentioned the clock. The boys have one in their room and when they aren't here, I sleep in there bedroom. There bed sometimes feels better. I took their clock off of the wall and laid it in the living room many times so I can sleep.

I don't know if it really is insomnia issues too. You could be right.

Ada

i also have to problems with the sounds smells and lights . i most of the time end up on the couch i guess since its kinda harder and DH isnt here tossin and turning its easier to be kinda comfy. i wish that i could find something that would work for sleep and keep me asleep ..

carrie
ps we have no ticking clocks :winky:

It has taken me every day until today to remember what helped me to sleep even better than any sleeping pill or anti-anxiety pill a doctor could prescribe & better than Melatonin ever worked for me also. It is Kava-Kava. But I am allergic to it. I broke out in huge itchy welts. But before that happened, I slept like a baby for a few weeks. It had to build up to a certain amount in my body before the allergic reaction set in. I was pretty despondent for awhile afterwards because at that time sleep deprivation was a big thing for me & it was caused due to Fibromyalgia pain at that time. I didn't have RSD as of yet.

Now I don't seem to have a problem sleeping at all. It is all I do anymore. And the damn Medicare DX program I changed to won't pay for Provigil without my having had a damn sleep study done & using a CPAP/BIPAP machine. Can you believe it???? So now I am back to sleeping all the damn time again & being bitchy & miserable. They also won't pay for something else I need but now have to buy over the counter. So in the long run they were not cheaper. And I asked before changing to this company if they paid for both of those medications. And the answer was yes. They lied big time & are now costing me more than if I had stayed where I was. Well I am going back to AARP next year for sure. They paid for everything my doctor prescribed. I am going to lodge a complaint against this group. If anyone wants to know who they are, well they are America RX. They suck!!! They won't pay for everything hubby needed either, so he has had to change to a different drug. Ticks me off.

Does anyone know of anything legal we can take to stay awake without resorting to drinking any of those damn drinks like say "Red Bull". I do not want to have to resort to anything like that.

Well ya'll take care......

DebbyV

Hi Debby,
 

I just had to pick up a new insurance a few months back. It's called Community Care RX or CCRX. I don't know if it's in your area.

Like you though I have had to fight them. My Dr. filled out papers to keep me on Prevacid capsule for my stomach. It's called a Prior Authorzation. You might try that.

My Pharmacist of 17 years told me this was the best company he has dealt with. Sometimes I wonder too.

Sorry to hear you are having trouble staying awake. I went through that for a few years. Now I can't sleep.

It seems we can't win for losing at times with everything going on.

I can tell by what you are saying you are frustrated. I totally understand. Been there.

Try the Prior Authorzations from the Dr. and maybe that might get some of the meds you and your husband need. You call your insurance co. and ask them to fax the forms and the Dr. fills it out.

Glad to see you around again.

Ada

Hi Ada,

I too have become hypersensitive to smells over the past couple of years. Recently I changed all of my soaps personal body, laundry and household cleaners to natural products without all the added perfumes and chemicals. I even have a special face cream compounded for me without all of that awful stuff in it. It has made a big difference. I do however like the scent of lavender and use it frequently in the bath and bedroom.

To help with really bad household odors like cooked beans for example I like to put a pot of mulling spices with cinnamon and cloves on the stove. Just be sure to keep it on low and check frequently for evaporation.

I don't hear so well now due to my tinnitus, but that is definitely something that can keep me awake. It can become very loud at night when everything else is quiet.

I have read recently that any light source can be bad for your sleep, that one should have complete darkness with no lights even from clocks or other other electronics. I don't know how much truth there is to that, if I recall correctly it is thought to help with the natural production of melatonin by our bodies.

Just a few thoughts...thanks for your comments.

MsL

Hi Debby,

I'm sorry to hear you had that reaction to Kava Kava, I recall reading something about that but haven't looked into it too much yet. Thanks for the reminder.

I'm really sorry to hear of your troubles with not being able to stay awake!!!Do you think this could this be caused by some of your medications? Did you check with your doctor on that? Something else to consider is hormonal imbalances, especially since rsd affects our adrenals hormones, could you be suffering from adrenal exhaustion?
I sure hope you are able to get this sorted out. Keep in touch and let us know how you are doing.

MsL

Hi every one,

unrestful sleep is definately an issue for me also. My husbands snoring (i was never bothered by it before) I like others migrate to the sofa. I can actually hear lightbulbs hissing or buzzing. Shutting them off it goes away. My husband it Electronic eng....he said that frequency is audible to people but ussually isn't unpleasant or goes without recognition. I know RSD causes some hypersensitivities from my experience. Including scented things. I use alcohol on a damp cloth to dust with it leaves the house with a neutral smell. Also we purchased an ionizer and run on very low level on the floor I am not occupiing. Back to scents or chemical products. We now never buy anything that has a blue color. Cobalt is used to make the color. I do not know how bad it is for health/rsd but I scrutinize every product I buy now.

I would like to know more about that supplement coctail at bedtime. Several months ago I took melatonin at bedtime. One did nothing and 2 helped me fall asleep at somepoint but I woke up with a hangover groggy all day. So I wonder if the combination of brain supps. would be better.

Thanks for listening, hope you all get restful sleep

Hi Debby,
 

I had side effects from Kava Kava years ago. Same with St. Johns Wort.

I have a collection of perfume bottles so I bought a showcase to put them in to keep from smelling them. I couldn't give them up. But that one night, I had one that was driving me crazy and I had to go find it. It was sitting out though.

My sense of smell and feel have multiplied but my taste sure hasn't. At times I have no appetite at all.

I have learned though like someone said to eat a bite before bedtime. That also seems to help.

Ada

Kava Kava has shown a potential for liver damage. So it is not
recommended for everyday use anymore.

You might want to try Valerian. This does help, and is mild.
You want to choose a good brand, since some suppliers do not
put quality herb in their product. Look for GMP on the label of the product you choose.

Valerian has a peculiar smell, so if you reflux it, it will be unpleasant. So take it 1 hr before bedtime, so it has time to move out of the stomach.
This link gives the most recent information on Valerian, drug interactions, etc:
http://www.umm.edu/altmed/articles/valerian-000279.htm