I seem to have the opposite problem of most people here. Over the last few months it has gotten more difficult for me to fall/stay asleep. When I finally do get to sleep I wake up after an hour or so and have trouble getting back to sleep. I only get about 4 hrs. sleep a night. I can't even fall asleep to nap during the day. But the odd thing is that I don't feel exhausted. It's almost as if my mind and body are disconnected. I never feel really relaxed either.
I have tried Ambien and Lunestra (?) and absolutely nothing happens. I had tried Ambien once or twice before I got sick and 1/2 pill would knock me out.
Has anyone else had this problem?
I had trouble staying asleep before. I'd fall asleep with no problem, but then wake up in the middle of the night and have trouble getting back to sleep for a couple of hours. Very frustrating.
I found taking some melatonin helped reset a better sleep pattern. Also important is to try to have a good and steady bedtime routine and "lights out" time. In addition, having good body alignment while sleeping helps prevent reasons for waking. If you want to try melatonin, make sure to check contraindications regarding medications you take, if any. I think melatonin shouldn't be taken with certain medication(s), but I forget which.
I have trouble sleeping and I take Melatonin and I use one half to one tab of Ambien when needed. I always sleep better with a full tab but I try to get by with one half or none if I can do it.
Unlike you, if I don't get good sleep then I feel fatigued to the point of distraction. I also have an underlying fatigue that is with me no matter how much sleep I get.
This seems unusual that you are getting such little sleep and don't feel tired. That concerns me. I hope you don't "crash."
I do think that Sjogrens has interfered with the quality of my sleep. (The quality of our lives!). Have you ever thought of having a sleep study done? Or, I would ask your doctor if you could try something else for sleep. lunesta and Ambien are different and yet very similar. There are other things you could try if you can get your doctor to order it for you.
My rheumatologist ordered my Ambien for me because my PCP gave me a hard time. I get so frustrated! I think the only doctor who knows just how sick I am is my Rheaumatolgist! (Please God, don't let anything happen to him!)
Hope you find good answers and help for your sleep issues.
Kathy
I was having chronic trouble sleeping or i would be half asleep all night. My body looked like it was asleep but my mind kept going.
I can't take any sleep meds because I don't metabolize them in any kind of timely manner and they make me groggy for days (even melatonin and valerian). I also can't take any stimulants for similar reasons.
I had a sleep study done and found that when I would start to go into REM sleep, my throat would relax and close off. I would wake up and start over again. In the daytime, I just consciously held my throat open. I wasn't getting any quality sleep. A CPAP really helped me sleep. I still wake up in the night but most of the time can fall back asleep. I even look forward to going to bed at night.
It might be worth a try.
First off, I did a pretty in depth study of Melatonin this past week and it really shouldn't be taken if one has autoimmune disease. I think this has something to do with the way the body makes and metabolizes the melatonin.
I have the same problem with the sleep. If I sleep 5 hours I consider it s blessing. I have had a few times that I have slept 8 hours over the past 20 years, but not many. There was a period of about 3 years that I slept 2-4 hours and had to go to work. It was bloody miserable. Most of the time I don't sleep from like 8 AM or earlier until about 2 AM.
I do occasionally take a nap but it is generally by accident. I am on Zoloft and one tab Lithium a day for my depression. I don't take sleeping pills cause they just stone me by the 3rd day. I have had sleep problems for most of my life and I am now 72. I slept better when I was younger, but not all that good. I have learned that when I am having the bad insomnia is usually when I seem to have more autoimmune symptoms. Years ago I finally figured out that in all probability my insomnia was fueled by my reved up immune system.
To me this makes sense. When the autoimmune disease is reved up or body is kicking out all those cells that are trying to kill us off. Sometimes I think the inside of our body must almost buzz with all the activity going on inside. Just my take on it.
If you aren't on an antidepressant you might want to check with your doctor. They are used as sleeping aides and can help you cope with all the anxiety that our health issues place on us. I know that I would not have made it without my meds. I suffered greatly with anxiety and insomnia when I was young and raising children plus working outside the home. I don't know how I did it when I look back. Good luck. Irish
That's interesting, Irish. I used small amounts of melatonin years ago on a few occasions without noticing any ill effects.
Always good to learn new things. After reading your post, I see John's Hopkins advises against it on their webpage about things to avoid when you have lupus and other AI disorders:
Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements. http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/
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Another website has an explanation for why which involves inflammation:
Melatonin has a number of contraindications, including use by people suffering from autoimmune disorders. One of the common effects of autoimmune disease can be inflammation. In usual cases inflammation is actually a very useful bodily response to infection which can isolate a particular site and prevent the spread of pathogens. In autoimmune diseases however, inflammation can cause severe damage and pain. Many of the effects of arthritis, particularly on the joints, are because of unwanted inflammation and its effects.
Our immune systems are also actually subject to the regulation of a range of different hormones like cortisol, testosterone, and melatonin. Melatonin's interactions with the immune system has been shown to increase inflammation in autoimmune sufferers, potentially worsening their symptoms.
Melatonin can achieve this through one of its many signalling effects. While the hormone's main responsibility may be in regulating our body's day-night cycle, it also has a range of other important functions, one of which is signalling the release of a class of chemicals called cytokines. These are responsible for triggering responses like inflammation, and this mechanism is why people suffering from autoimmune conditions are advised against using melatonin. http://www.healthcentre.org.uk/pharmacy/melatonin-jet-lag-autoimmune-conditions.html
Hi am 45 and I cant sleep well either I drive my wife crazy cause I don't go to bed until 5am and I sleep for 4-5 hrs then Im back up anxiety and dryness keeps me up my neck and back hurts too. I know what your going though.
I have been having exactly the same kind of sleep issues for at least ten years now - I'm now 49. I usually don't have any issues getting to sleep providing I follow good sleep hygiene (wind down time, relaxing environment with blackout blind, no alcohol or stimulants etc etc etc) however I rarely get more than about four hours sleep tops. It seems as if something inside my brain just clicks onto fully awake and I simply cannot get back to sleep again whatever I try. Sleeping tablets don't really work for me and they're not a good idea in the long run anyway. I've tried amitriptyline but that doesn't maintain sleep for me and in any case is far too drying with the Sjogrens. Funnily enough my body seems to cope with the sleep I do have and I also cannot sleep during the day - I may be able to doze but still have full consciousness of my surroundings. I don't like to think too much about what this might be doing to the state of my brain in the long term!
I find a technique of progressive muscle relaxation often helps when I can't sleep. In case you don't know what that is: you start off tensing one set of muscles (say your feet), slowly count to ten, then relax the same muscles while you count to ten. Notice the difference between tense and relaxed muscles. Do that a few times, then move up to your leg muscles and do the same thing. And so on up your whole body, including facial muscles.
I had a lot of trouble but have now worked out a non med approach that most often works. I take so many meds I did not want to add sleep medicine without trying non med approaches.
You don?t say how old you are but menopausal women can develop sleep issues without SJS being involved.
I follow the AMA sleep hygiene steps and it mostly works for me.
1. Exercise for 45 min to an hour before 2pm every day.
2. No caffeine after noon....none.
3. Keep temperature in the room 70 or below. 68 is preferable according to them.
4. Dark room.
5. humidifier next to my head on low(ok a little light is on but can not have everything)
6. No alcohol most days....once in awhile a small glass of wine but no later than 7pm.
7. Drink water during the day to stay hydrated but cut it off at 6pm...for obvious bathroom break reasons.
8. No dedicated use of tablets, computer screens, tv after 7pm. The blue light interferes with sleep. (This one I violate but when I was first having real problems I did give it up and watched shows on demand earlier in the night the next day or so.) Now I make sure to stop using the above and read (a real book) or knit for 1-2 hours before bed.
9. Part of falling asleep is your body cooling off... a trick they say is to take a warm shower an hour or two before bed and as your body cools off after it stimulates sleep. I have tried that and it helps but I do not do this religiously.
10. Always (even on weekends) wake up and go to bed the same time.
11. No naps.
This works for me. I started out following all and then have gotten a bit laxer on some to see how I react. It is trial and error.
Navigator and Araminta - what you have recommended works very well for those people who have trouble getting to sleep or those new to insomnia. Unfortunately these methods seem to have little effect on sleep maintenance . . . I have tried all of these suggestions and still follow them as they are very good ideas for helping our mental state and calming down any general anxieties etc. Unfortunately I do not believe that there is very much out there to help with staying asleep and improving sleep quality. I would love to go to a sleep study centre but sadly on the NHS in the UK I think you have to be very lucky in having a GP who will refer you for this!
Thank you all for your responses. Everyone here is so helpful, caring and supportive. That helps so much.
SjogiBear - Your sleep issues sound exactly like mine with the exception that I can't fall asleep. This part of the problem just started a few weeks ago so I tried sleeping pills again. And again they didn't really work for me. When I finally get to sleep I still wake up every hour or so and have trouble getting back to sleep. So frustrating!
Irish - I think you're right about the inflammation. Many of my Sjogrens symptoms have gotten worse over the past few weeks. (Maybe a flare?) Then I get stressed out and anxious with worry.
Kathy - It is very strange that I get so little sleep yet I'm not exhausted. I am a bit concerned about that too. I have some very physically active days yet I'm still not tired and still can't sleep or nap. I've wondered if something neurological could be going on. I tried melatonin early on (on the advice of my rheumy) and like the sleeping pills it did nothing for me. You're so lucky Ambien works for you.
Question about sleep studies: I get up many times a night to go to the bathroom. Can you do that in a sleep study or are you hooked up to a machine? I don't know a thing about how they work...
w2d
Way2Dry,
I am awake with you! I tend to have a sleep disorder but amitriptyline has helped me survive. My doc tried many antidepressants and a tricylic was what worked for me. Melatonin didn't help a wink. Now that SS has kicked in, my doc and I may have to revisit that but only if it doesn't take me back to the place where I couldn't sleep and was not tired. That is a risk for "crashing" as was mentioned. I came close.
A system I developed which has helped my mind stop spinning - and go back to sleep if I wake up - every night for the past 5 years or so:
Relax everything, even my face
Take a deep breath, exhale slowly
Start at 10 and count backwards to 1, one count per slow exhale
Focus on breathing, slowing it down
It takes a while and if I get distracted, I start at 10 again
Sounds flaky but it helps my mind slow down and focus on something boring, like breathing.
My amitriptyline has been a life saver for me and I can increase it if I need to. I'm just concerned about it dehydrating me more. I am having more trouble again and am wondering if SS is contributing. As my symptoms develop and change, there definitely seems to be a lot happening on the interior!
All the best to you. Keep trying different things. I did a sleep study too and periodic limb movements were one problem. I think part of that was leftover restless leg syndrome from med trials. We each have to find what works for us. It won't always be this way!
I go through spells like this. Sometimes I am awake for 2 days followed by sleep for two solid days. I've learned that sometimes using relaxation techniques can at least help me feel "rested" physically. There was a time that it would last a week or longer. But at least now it hasn't been longer than two days lately.
Quote from: SunshineDaydream on December 07, 2015, 07:10:09 PM
That's interesting, Irish. I used small amounts of melatonin years ago on a few occasions without noticing any ill effects.
Always good to learn new things. After reading your post, I see John's Hopkins advises against it on their webpage about things to avoid when you have lupus and other AI disorders:
Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements. http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/
--------
Another website has an explanation for why which involves inflammation:
Melatonin has a number of contraindications, including use by people suffering from autoimmune disorders. One of the common effects of autoimmune disease can be inflammation. In usual cases inflammation is actually a very useful bodily response to infection which can isolate a particular site and prevent the spread of pathogens. In autoimmune diseases however, inflammation can cause severe damage and pain. Many of the effects of arthritis, particularly on the joints, are because of unwanted inflammation and its effects.
Our immune systems are also actually subject to the regulation of a range of different hormones like cortisol, testosterone, and melatonin. Melatonin?€™s interactions with the immune system has been shown to increase inflammation in autoimmune sufferers, potentially worsening their symptoms.
Melatonin can achieve this through one of its many signalling effects. While the hormone?€™s main responsibility may be in regulating our body?€™s day-night cycle, it also has a range of other important functions, one of which is signalling the release of a class of chemicals called cytokines. These are responsible for triggering responses like inflammation, and this mechanism is why people suffering from autoimmune conditions are advised against using melatonin. http://www.healthcentre.org.uk/pharmacy/melatonin-jet-lag-autoimmune-conditions.html
*JAW DROP* Holy crapola Batman!! I had NO idea! In fact - I worked in Rheumatology and I don't think I heard anything about this. Zip, zilch, nada. WOW. I'm taking Melatonin 10mg the max dosage at night! I switched because taking Doxylamine is heavy duty and causes memory issues and some histamines irritate the bladder... I thought natural would be better of course. Go figure!
Ugh. What do we do, then? Elavil is just horrible because it's an anti-cholinergic and Sjogren's patients will have worse symptoms with it, plus that medicine is notorious for horrible weight gain. I absolutely refuse to take anti-depressants because they make my stomach stop and I end up SMOKING. Or vaping. Or chewing nicorette gum 24/7 to stay focused and not in a haze and mostly to stimulate my bowels because they just STOP on SSRI's and SNRI's. The only one that didn't do that was Cymbalta and go figure my ALT/AST labs shot up with that medication so... Bupkis for me! I even tried Buspar and at first it was relaxing and I thought helping with sleep but then a few days later INSOMNIA. Apparently that's how that drug does... Weirdest thing, ever. I hate these psych meds! They do nothing but make me worse in that they dry me out, clog up my bowels and make me apathetic and uncaring but happy about not caring about anything! Not a good combination. ALL of them did that. ...Except for Cymbalta.. ;___;
Lunesta? I liked Lunesta when I took it... ;__; Valerian root is okay, but it works like a Benzo like Xanax and so it makes me depressed the next day and weepy if I use it too much.
In my sleep study, I had a private bathroom in the room. When I needed to get up, I signaled my watcher, who came in and disconnected me while I left. I think that probably most people doing sleep studies have to get up in the night! There was someone watching and connected by speaker all night, so that anything that came up would be easily resolved.
Hi everyone,
I've been going through this forum looking for answers or ideas as to what might be part of my illness and what isn't... and this has all really been helpful. Even before my diagnosis I noticed that my sleeping patterns have been really off. I wasn't sure if it was anxiety or something else. All of these tips will really help. I feel like I'll be really prepared for my rheumy appointment at the end of the month. ;D
I've never responded well to melatonin and was always curious as to why it made me feel doped up and really tired. The inflammation reasoning and the article sunshine and irish posted were really informative and probably very accurate. Navigator thank you for those tips - they are already for the most part what I was doing already instinctively (you start to narrow down what aggravates things and helps things over time) but these are really sound and I'll be trying them out to see if it helps at all with my sleep patterns.
Thanks guys for the support.
I am going through a bad period in my life. It really got worse when I finished my 5 months of 1000 mgm solumedrol monthly infusions. I have had a fair amount of nites that I could not sleep at all. I just decided not to panic and watched the weather channel and read some and napped and rested during the day.
I have also developed some depression since then and have now had my Zoloft increased. I decided to look up the symptoms of low serotonin and my goodness, it is very interesting. Insomnia and many other things. It is something worth searching and reading. There are also foods that one can eat that can help some with increasing serotonin. If a person is really low then they would need to take a SSRI med which included the med Zoloft. Just a little info. Irish
I found that the onset of SS symptoms disrupted my sleep. Before SS, I used to sleep easily through the night and fall asleep right away. Once my symptoms hit, I would wake up frequently and struggle to get back to sleep.
I started tracking my sleep carefully several years ago with a smartphone app that syncs to my watch and monitors my movement at night. The app is called "Sleep as Android", but I'm sure there are similar apps for iOS. If you don't have a compatible watch, you can put your phone near your pillow. It creates graphs and charts, and you can tag specific nights with custom tags for things like medications.
This has helped me immensely because I can correlate sleep length and quality with treatments that I'm trying at the time. I believe low-dose Naltrexone and helminthic therapy have both helped improve my sleep quality. CBD oil may also be helping, but it's too soon for me to tell. Stress reduction and relaxation techniques are also very important for me.
I have had an increase in my insomnia and I have had way too many nights where I was awake all night. I did not feel like sleeping. It started prior to my 1000 mgm solu Medrol IV once a month and got worse while I was on the solumedrol. I have been off the Medrol IV since mid Sept and am still having the bad insomnia.
I am also having many other health issues that I finally went to the doctor with about a list of 15 things that need to be addressed seriously and need to have some referrals to other specialties. I know that some of the symptoms are from depression that is becoming an issue. This also ramped up after I quit the Medrol. Sort of like after the fact kaboom.
So I finally called my psych doc and he increased my Zoloft and I am t see him in 2 weeks. Now, I have been on Zoloft since 1992 and I bet I am one of the drug companies older patients. This is the antidepressant that has kept me able to be up, living and working. Not all days have been perfect, but so much better than without the med.
Sooo, I was way behind on my Zoloft and depression research so I was sort of buried on line for a few hours this weekend. Interesting to see all the info out now. The colon produces more serotonin than the brain does and this is one of the reasons that the colon has so many issues. We don't have too much serotonin from the bowels that cause problems, it is the fact that our serotonin is low. I am hopeful that adding serotonin will help my depression and my colon. My colon has been such an issue and so many scopings in different areas without finding too much wrong. The reflux is always an issue and have to watch that.
I am wondering if some of you with insomnia have considered trying a SSRI med such as Zoloft or one of the others to help with sleep. If you look up symptoms of low serotonin you will find many lists of symptoms that one can have that will improve usually with an antidepressant. Some of you would do well with just a dose of 25 mgm an hour or two prior to bedtime and it would make life so much easier. Some people need to take the 50 mgm which is the average dose.
It is actually much safer to take an antidepressant low dose than to take ambien, etc at bedtime. While driving down the road one day there was a radio program on about the poor sleep habits of Americans. The guy talked about how much people worked and then all the things they had to do when they got home from work with kids, homework, sports, etc. Then, the kids are in bed and it is 11PM and instead of going to bed people hit the computers and pay bills, do extra work they brought home, shop on line, etc. Then they take their ambien and go to bed at 1 AM if they are lucky.
The highway patrol has been keeping track of morning car accidents the past years in relation to ingestion of prescription drugs such as ambien, etc for sleep. THe number of morning accidents are way up and morning sleepiness from hangover of too little sleep combined with sleep meds. It was a significant amoun of increase in accidents and quite scary as these people have kids they need to raise.
Taking a low dose antidepressant on a regular basis for sleep generally maintains a more constant blood level that isn't as apt to produce the morning hangovers. Be aware that one does have to adjust the med dosage and usually their is a week or two or sleepiness until one gets used to the product.
I am not working for the drug companies, but there is a lot of information out there on Ambien and the other sleep products regarding getting people too stoned. I took a very low dose of Ambien many years ago and by the 4th night of dosing I could hardly walk the next day from weakness and staggers. That was the end of that drug for me. It really scared me cause I bet on long term dosing I could have almost become comatose as I am so drug sensitive. So, just some info for you to ponder over. Irish