Insomnia

[Reabee2]

It seems that I have always suffered from bouts of insomnia from time to time, however recently it has gotten a lot worse to the point where I can't sleep at all for days and then when I am lucky enough to sleep I sleep for an hour and wake up, and sleep for another hour and wake up, and so on for about 5-6 hours, and I do not get any rest from the little sleep that I do get.  I am a student in law school, which can create stress; however, I am in my last semester and am taking a very light class load.  I have tried various sleeping pills both OTC and prescription.  I have found that the OTC brand does nothing but make me feel drunk for 8 hours.  I have tried Ambien and Lunesta and in both cases I slept for exactly 7 hours and then woke up, no matter how tired I was and they triggered such terrible headaches the next day that I had to stop taking them.  I have tried eating foods (like sour cherries) before bed that are supposed to help your body produce melatonin naturally, and I have tried taking melatonin and none of this helps.  Of course to complicate matters I get terrible migraine headaches when I do not get enough sleep.  The only thing that has actually worked for me in the past has been when my doctors have prescribed sedatives, but of course they will not do this long term. 
I am not sure if SjS actually "causes" insomnia, but I have read a few posts about it on the discussion forum.  Does anyone have any other suggestions on things I should try to get some sleep?

[CAT1962]

Sjogren's is absolutely associated with Chronic Fatigue and insomnia. I have them. It's terrible. I don't sleep at all. I do have an O2 machine for some low oxygen levels when I sleep, but that stupid cannula keeps me awake, so how does THAT help!?  I take Travocor for my amino acid defs, among other stuff...it helps me stay sleepy, but I still wake up frequently. (I just don't lie awake for hours.) It has tryptophan in it...I guess a pill of warm milk before bed? 

[Meld256]

Hi Reabee2,

Yes, like Cat wrote, insomnia can be a symptom of Sjogren's and Chronic Fatigue, which I have, along with the Fibro. combo. I still have some problems with sleep, but the best thing that works for me is Trazodone. I've taken 100 mgs. each night for a year and it's really the only way I get sleep most nights. Just a suggestion...along with the other ideas like a not-too-hot room, and a dark and quiet room.

[Sandisue]

Hey Reabee2,

I have a terrible time falling and staying a sleep. They say I have a racing mind, something about I just can't shut down to sleep. I have to take Ambien or Lunesta. I'll lay awake in bed and mentally decorate my house, my flower garden, what would I do if I won the Lottery. Crazy stuff.. I've always been this way, but since my Sjogren's diagnosis (12/10) it seems to be even harder to get enough sleep. Dealing with the fatigue and pain/soreness, plus I work the third shift. Its such a struggle. I just have to be careful with the Ambien, sometimes I do things and say things I don't remember. Especially conversations on the phone. I think Sjogrens and insomnia are definitely related. Good Luck and I hope you get some good sleep soon.

Sandisue

[amk922]

I've dealt with insomnia for quite a while. One of the troubles with Sjogren's is that even when you do get a full 7-8 hours of sleep, sometimes the fatigue is still there. I tried Restoril for a long time which worked great, but gave me really bad amnesia if I stayed up more then 15 minutes after taking it. I also started to get an eye twitch.  My doctor tried me on Ambien CR which was not effective at all, then Lunesta, which I take now nightly. It works about 70% of the time. Sometimes when I'm more achy and my joints hurt, it's just hard to sleep. I'm trying a new strategy (first time last night) where I take the majority of my meds a few hours before bed instead of right at bedtime, and then just the Lunesta before bed so it's not competing with all the other drugs.  I slept well last night, so I'll keep trying this.

[CAT1962]

Sandiedue... the lottery!  I think about the same thing at night. I will share if you will..maybe TWO of us wishing, and losing sleep over it, will help. Teamwork! 

[drylady]

Hi Reabee,

My insomnia started about 10 years ago with the dryness. I can get to sleep but I wake up every hour sometimes and I also experience the racing thoughts. Now I have to take Temazepam if I want  to get decent sleep.

The Sjogrens must effect the brain because besides the insomnia I have brain fog and mood swings. Does anyone else experience mood swings, like major ones? lol

I've been taking Plaquenil for months and at least that has helped with the brain fog, which was getting bad.

[CAT1962]

Drylady, I have mood swings, but don't know if I can blame SjS. I guess I could! I feel so horrible...I could use some meds for self control. 

[happylife]

It seems that I have always suffered from bouts of insomnia from time to time, however recently it has gotten a lot worse to the point where I can't sleep at all for days and then when I am lucky enough to sleep I sleep for an hour and wake up, and sleep for another hour and wake up, and so on for about 5-6 hours, and I do not get any rest from the little sleep that I do get.  I am a student in law school, which can create stress; however, I am in my last semester and am taking a very light class load.  I have tried various sleeping pills both OTC and prescription.  I have found that the OTC brand does nothing but make me feel drunk for 8 hours.  I have tried Ambien and Lunesta and in both cases I slept for exactly 7 hours and then woke up, no matter how tired I was and they triggered such terrible headaches the next day that I had to stop taking them.  I have tried eating foods (like sour cherries) before bed that are supposed to help your body produce melatonin naturally, and I have tried taking melatonin and none of this helps.  Of course to complicate matters I get terrible migraine headaches when I do not get enough sleep.  The only thing that has actually worked for me in the past has been when my doctors have prescribed sedatives, but of course they will not do this long term. 
I am not sure if SjS actually "causes" insomnia, but I have read a few posts about it on the discussion forum.  Does anyone have any other suggestions on things I should try to get some sleep?

Insomnia is reported by 86% of confirmed Sjogren patients. Look at this article for details - http://info.sjogrens.org/conquering-sjogrens/bid/127524/Sjogren-s-More-Than-Dry-Mouth-and-Dry-Eyes

Now when i spoke to multiple doctors i heard that CBT - cognitive behavioural therapy is the only solution that will likely give you better sleep than any sleeping pill can give. So follow CBT religiously and thats that best that is available for us.

I tried 4 sleeping pills (melatonin 6 mg, zolpedim 10mg, petril beta 20mg, Quetiapine 25mg) and all of them i get a max of 4 hours of sleep with huge hangover for the next day. Now with CBT i get the same max of 4 hours of sleep but with not tablet induced hangover. I do feel fatigue but that is a direct outcome of how little i would have slept.

[happylife]

Please read this survey done in 2017 on sjogrens, this confirms that insomnia / sleep problem is reported by 67% of sjogren patients  - http://www.sjogrens.org/files/articles/SSFLivingwithSjogrens.pdf