I have like many of you a very big problem with sleep. I can go 2 without even a wink of sleep. Most nights I get at the most a few hours and it is very choppy. I have been out of bed since 3 am already. I can't take naps either. At night I take klonopin and serequel and then trazadone was added but nothing. My new psych said I could also try ativan but to start it without klonopin to see how I do. I am so frustrated and on edge. Anyone found a med that has helped them. Also my pain doc gave me zanaflex for at night but I have not tried it yet. Thanks

Daniella, first of all I wanted to ask you is Serequel a med for depression or is it an anti-anxitiy med? I have the same promblems with sleep as you do. I take Clonazepam and Temazepam. Also my RSD pain med's. After thinking that I was only sleeping for 2-3 hours per night after two years,I fianally went to a sleep lab over night. I got hooked up to all kinds of probs and other equipment. After it was all over I meet with a sleep Dr psycholgist. Who told me that if I only had slept that much in all those years that I would be dead. Even going 2-3 weeks with only getting 2 hours of sleep every night you would end up in a hospital because your body and your mind just could not take it. It turned out that I have Sleep Misperception State: Just look it up in your computer. It is easier that way than for me to tell you what it is. Take Care! Breezy55

I have a "suspicion" about RSD.
I think it "turns on" our adrenal glands, inappropriately.

Sometimes, I lay down, (I only have a love seat to sleep on, but, it's OK, with the cpap) keeps me from tossin' around. anyway, soon as I lay down, my eyes just pop open!

It's as if I'm so "looking forward" to sleeping, that I get excited, and can't do it!

I think RSD plays tricks with many of our glands, and therefore we get as messed up as we do.
And, our poor doctors, really don't know what to do, except "treat the symptoms".

And, we're ALL Different!

But, over time, we all seem to get on a "cocktail" of some sort... for our "Array of Problems".

Just a few thoughts.

Pete

Thanks guys. Breezy I read about that but for ex I can tell you every show I watch and what it was about in the night. I have been hospitilized a few times and they do rounds every hour to check on you and if you are up you have to raise your hand which I did. This is not an every night thing but most nights I am up. The serequel was used for anxiety but also was supposed to aid in sleep. My anxiety is less though still high but no where like it used to be.
Aintsobad I do think that I get so anxious when I want to fall asleep that keeps me up. I dread laying down cause my pain increases which increases my anxiety so on. I have just recently been on the meds I am on. Well for aound 4 months. Before that I was off meds for awhile.
I did get some rest last night though did wake a lot. I tried a new med last night that may of aided but today feel like crap from it. Hopefully the body will adjust. Thanks again.

Hello Daniella,

I take Ativan .5 mg. twice a day for anxiety.
When we try to rest at night the pain is worse because our mind isn't occuppied by anything but the pain. Ativan helps me.
Take care,
Sherrie

Hi daniella.
I have full body RSD-13 years. Not sleeping has been a huge issue for me. My Dr. is a psychiatrist, neurologist, and pharmacologist. His Dad a Dr. his sister a Dr. He works with a couple of pharmaceutical companies and does studies and teaches on the west coast. He just is finishing a study for sleep for seroquel. This drug, is usually for bipolar and scitzoiphrenia-spelled wrong. Any way his drug study was for using this drug for sleeping. He is just finishing it up and will write a report on it. I had been taking
Ambien Cr. 25 mg. Vicodin 6 pills a day, Antivan or lorazepam, 2 high blood pressure meds.and 120 mg. cymbalta. I had been on 3200 mg of neurotin, but asked to go off it- it caused so much weight gain,, but it kept from having my dailey and nightly electric jolts, jerks, spasms. I went off last October and no bad symptoms. Lost 30 lbs so far and trying on my last 30lbs. I have had a couple jerks , but nothing like I used to.
I told my Dr. that Loreazepam helped me so much, I would rather drop a vicodin than drop the anxiety med.
A couple of months or 3 ago, my sleep med stopped working. I went 6 weeks to 2 months of not getting to sleep till about 5-6 a.m. one night I didn't get to sleep till 9 a.m.
It was awful. So we decided to try seroqouel 300 mg. The dosage for bipolar and S is 400-800. He told me to stay in bed=don't drive etc. So a month ago I started seroquel. 300 mg. The first night, it packed a punch, My husband had to help me to the bathroom,
Next night i onlhy took 150 mg. slept good. Dr. told me to go back to 300 mg. so I did. I forgot to say, when he started me on seroquel, he cut my anxiety med in half. He left it up to me to regulate my pain med.I can't tell you how well I'm sleeping. I take the med at 7 pm no food. an hour before or after. I am sleeping so well, it's a miracle. I have been only taking 3 vicodin the last 5 days instead of 6. I used to take 1 lorazepam 2 mg. 3 times a day. When I started seroquel, he cut it to 1 lorazepm 1 mg. 3 times a day. But I've only been taking 1 lorazepam 1 mg. twice a day.
I see this Dr. once a month and pay out of pocket. He doesn't take insurance. His practice is mainly difficult cases, teaching, and drug studies and writing. He just built two clinics, both are about 5 minutes from our home. He has a HBOT in both of them. I'm going to try the HBOT. I believe they are the only ones outside a hospital in Arizona.
In my opinion antivan, or lorazepam is a very important compotent for managing RSD. Reducing the anxiety, calms the sympathetic nervous system down. I can't hardly believe how much better I feel with the restorative sleep, my Dr. calls it. I feel like I'm getting part of my life back. I'm back doing some errands in the afternoon.
Seroquel does have a comment on weight gain. I was holding the 30 lbs. real good until I took seroquel. It put 5 lbs instantly on, and I've taken it off this past 5 weeks.
Well, that is my thoughts from my personal experience. I really hope you get some peaceful sleep soon. Everything looks so different with a good nights sleep. Take care, loretta

Hi Breezy55,
Seroquel has basically been used for bi-polar and schezophrinia. (spelled wrong. I have neither of those illnesses. My Dr. I see once a month that manages my RSD is a neurologist, psychiatrist, and pharmacologist. I have been seeing him 5 years. Seroquel must have some anti-anxiety in it, because when he started me on it last month, he cut my lorazepam in half. My ambien CR stopped working totally. I wouldn't get to sleep till 5-6in the a.m. It was awful=had no life. He has very few patients, teaches a lot on the west coast. Does studies for a couple of pharmaceutical companies. Just finishing up a study on seroquel to be used as a sleep aid. He is about to write up the report.
He just built two clinics and has HBOT in both of them. I am excited to try it. I'll report on my adventure. Take care, loretta

Hi Sherrie,
I once told my Dr, if I had to choose giving up a med, it would be vicodin and keep lorazepam. He agreed. I get such benefit with lorazepam, it keeps my sympathetiic nervous system, calm. I had a terrible time sleeping, so my Dr. took me off, Ambien and put me on low dose seroquel. 300 mg. I get solid sleep without interruption. I feel good the next day-no strange symptoms. My Dr. cut my anxiety med in half, when I started seroquel. He left it up to me on my pain meds. I have been on 6 vicodin for years, and now I mostly take 3 a day, rarely 4.
Sherrie, I always enjoy your posts. Thank you - and take care, loretta

Hi Pete,It's crazy isn't it to need sleep so bad, lay down and BING can't get to sleep as hours pass. I never had any sleep issues until this mess.
I think I had told you my Dr.does studies for drug companies. He is just finishing up one on seroquel. Los dose-I take 300mg. What it was intended for 400-800mg for bipolar and skitzophrenia. sp? So this study is nearly finished-the one for sleep. low dose. I get such restorative sleep. I don't have any strange symptoms in the morning. It's just
amazing how I feel with good sleep. Something I have added to my eating is vitamins, and am more conscience of what I eat.
It's a fact that RSD effects internal organs. Interesting thoughts. Take care of yourself, loretta

I'm taking 3 instead of 6 vicodin. Taking 2 1mg of lorazepam instead of 3 2mg. I really don't know what is happening. But I going in the right direction.

Thank you guys. For me I am not on narcotics anymore. I rarely used them but my current pain doc does not feel for me it is good. I too see a psych plus my pain doc. The psych was a good choice to add. I have been back seeing one for 4 months and even others comment at my mental state being better and more rational. I am still anxious but before I was loosing my mind like almost in a psych ward.Loretta I may try the HBOT too. I am waiting just because I have made progress with my current treatment of neurontin,etc. I don't have the weight issue and I am trying to gain more again anyhow. I take supplements as well. Loretta I am sorry for all you have and are going through. I hope the HBOT really helps you.
Sbowling my mom is on ativan and she has sleep/anxiety and found it helpful so why I asked my psych.I'm on klonopin too though and both together I heard are not the greatest on the body but will see.
Thanks