Author Topic: Profound insomnia - what works?  (Read 338 times)

DP

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Profound insomnia - what works?
« on: May 18, 2017, 06:29:18 AM »
I've had Sjogren's for 2 years and get a lot of relief from joint pain & fatigue with Plaquenil & Cymbalta (thank goodness). No new meds in past 3 months
 
But in the past 5 weeks my insomnia has worsened to the point that I must take temazepam every single night. I find myself wide awake. No pain, no anxiety, just wide awake. No new stressors in my life. 

I use good sleep hygiene (cool room,no electronics for 2hrs before bed, exercise 3 days/week late afternoon, no caffeine after 10am, sleep hypnosis tapes, quiet/dark room).

Has anyone had success with different approaches? Like a muscle relaxant? Hot or cold packs? Massager device for neck or back? Heavy or weighted blanket?

I'm literally at the end of my rope. I really hate to be on sleeping pills forever, especially since my Sjogren's is only likely to get worse.

TIA for your advice.

Dawn. P.
Living with primary Sjogren's since 2015, SSB-positive, overactive bladder, insomnia. Currently taking Plaquenil, Cymbalta, Xiidra eye drops, Detrol LA, Lodine, Tramadol 3x week, Temazepam to sleep, ubiquinol (coenzyme Q), Omega 3 fish oils, Vitamin D, calcium, zinc.

SunshineDaydream

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Re: Profound insomnia - what works?
« Reply #1 on: May 18, 2017, 07:04:38 AM »
Magnesium is known to be a sleep aid. There are several different kinds and it is my understanding that magnesium glycinate is the most bioavailable and helps with muscle relaxation. I take KAL brand and my friend swears by Doctor's Best High Absorption Magnesium. Some kinds of mag are known to help with constipation so be careful if that's the kind you get but don't need.

Check for contraindications with prescription medications and other vitamins and supplements before taking.

Good luck. It's so important to get a good night's sleep and very frustrating when it doesn't happen.
« Last Edit: May 18, 2017, 07:08:56 AM by SunshineDaydream »
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Joe S.

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Re: Profound insomnia - what works?
« Reply #2 on: May 18, 2017, 07:40:26 AM »
Some people enjoy a lavender scent on their pillows to help them sleep.

Valerian root has proven useful to some. Often found in a mix with passion flower.

I use a very simple meditation.
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quietdynamics

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Re: Profound insomnia - what works?
« Reply #3 on: May 18, 2017, 09:48:28 AM »
Like you I tried and still do 'good sleep hygiene' .. I did get some help  taking Melatonin 3mg. As we age we produce less, and indoor lights can affect production, monitors, etc. All Drs know I take this. 
Info on Melatonin: http://www.webmd.com/vitamins-supplements/ingredientmono-940-melatonin.aspx?activeingredientid=940

Cymbalta: I use in combination with another med to control pain. At higher dose I had insomnia and it helped to "not" take 2nd dose before bedtime, rather to take it with dinner.
"What are the possible side effects of Duloxetine?
Common Side Effects
Headache, nausea, diarrhea, dry mouth, increased sweating
Feeling nervous, restless, fatigued, sleepy or having trouble sleeping (insomnia)
- See more at: https://www.nami.org/Learn-More/Treatment/Mental-Health-Medications/Duloxetine-(Cymbalta)#sthash.mssQKKZi.dpuf

INSOMNIA/SJOGREN SYNDROME
Audio-Digest Internal Medicine, Volume 62, Issue 02,January 14, 2015
Managing Insomnia in Older Adults – Colleen Christmas, MD, Sjögren Syndrome – Alan Baer, MD
Summary (site sells audio, so edited link)
 Google www  dot  audio-digest.org/pages/htmlos/summary.html?sub1=IM6202

If I do not get solid sleep I crash for days.
Neurologist prescribed ambien.
Hated to add another med, but, losing days due to lack of quality solid sleep.. and being 'in-life' was not worth overlooking benefit of med.

Sometimes even with Ambien I have sleep difficulties..  I find

Hmmm.. I see I should take D in the morning.
"An observation of sleep improvement with vitamin D supplementation led to a 2 year uncontrolled trial of vitamin D supplementation in 1500 patients with neurologic complaints who also had evidence of abnormal sleep. Most patients had improvement in neurologic symptoms and sleep but only through maintaining a narrow range of 25(OH) vitamin D3 blood levels of 60-80 ng/ml. Comparisons of brain regions associated with sleep-wake regulation and vitamin D target neurons in the diencephalon and several brainstem nuclei suggest direct central effects of vitamin D on sleep. We propose the hypothesis that sleep disorders have become epidemic because of widespread vitamin D deficiency "   https://www.ncbi.nlm.nih.gov/pubmed/22583560
« Last Edit: May 18, 2017, 10:32:42 AM by quietdynamics »
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irish

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Re: Profound insomnia - what works?
« Reply #4 on: May 18, 2017, 07:23:58 PM »
Melatonin is a natural product and is really used a lot these days. I have been sort of borderline on this drug but my grandkids take it occasionally when they have really bad evenings settling down. I recently read an article by a doctor who takes it in order to make sure that he got adequate sleep so he could do his job better. I imagine a doctor can lay awake and think of lots of things to worry about.

It might be interesting to talk to your doc about this. Also, talk to your psychiatrist if you have one as they work with sleep products all the time. The one thing that is good about this drug is that a person can decided just how many milligrams they want to take. You can take different dosages and work out which dose works for you. Also, some people are limiting the number of times they take the med each week.

There is a lot of info on the internet and a lot of it is articles by doctors and research articles. Hope you can get things straightened out. Also, note that melatonin is probably safer than the sleeping pills.

Just a note: I don't know if you have had your thyroid checked, but it might be a good idea to have a TSH done to see if your thyroid is not working well. This can cause insomnia. I know that I get uneasy and don't sleep well when my TSH is out of range. Good luck. Irish

SjoDry

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Re: Profound insomnia - what works?
« Reply #5 on: May 19, 2017, 04:10:23 AM »
Dawn,

I have started doing hypnosis every night (or almost every night). There are many hypnosis videos you can use for free on YouTube. I have been doing pain management, sleeping, weight loss, etc. I just use my IPad, ear buds and an eye mask. About an hour or so before bed, I listen to the recording while lying in bed. It is helping me.

It can't hurt and it may help.
Good luck.
SjoDry
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Way2dry

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Re: Profound insomnia - what work
« Reply #6 on: May 19, 2017, 05:03:23 AM »
I have had terrible difficulty sleeping since shortly after developing Sjogren's.  Some times are worse than others.  My biggest problem is staying asleep.  I wake up every hour or so and never feel rested.

No drugs worked for me, not even Ambien, until I tried Xanax.  I try not to take it every night and then I use my "sleep machine" instead.  I find the sound of gentle rain helps me fall asleep, although I still wake up after a couple of hours. Then I turn it on again and usually fall back to sleep.

Hope you find something that helps you. 

Primary Sjogren's dx'd 2013 on symptoms. Blood tests neg. Breast cancer 2013. Dry everything. Tinnitus, GERD,Tamoxifen, vit d, Restasis & Evoxac stopped working, COQ10, fish oil

Deb 27

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Re: Profound insomnia - what works?
« Reply #7 on: May 19, 2017, 11:49:09 AM »
Maybe a medication? Most antidepressants give me bad insomnia. Plaquenil that I have to take gives bad dreams. I am prone to insomnia at times and sometimes adding a medication can make it really bad. I feel your pain and sorry you are going through this. I am about to take a nap myself. Let us know if you find out what the problem was.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
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ignatz

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Re: Profound insomnia - what works?
« Reply #8 on: May 19, 2017, 12:04:04 PM »
I'm similar to Way2dry, falling asleep isn't a problem but staying asleep is. No matter how tired my body is I always wake up after 5-6hrs, ~2hrs less than usual. It's not a problem for a few days or even a week but it's been weeks and weeks now. I already have brain fog from Sjogren/Lupus and this makes it that much worse.

I've been trying to stay away from sleeping meds because they make me feel groggy in the morning but I'm going to start taking Lunesta a couple times a week and see if that helps.

Sonata is good one to try if you want to get off temazepam, it has a short 1/2 life and less potential dependency issues.


Good luck.
SLE with secondary Sjogrens, Raynauds.

Lotus1

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Re: Profound insomnia - what works?
« Reply #9 on: May 19, 2017, 04:21:09 PM »
It took me 13 yrs to find something that worked for my insomnia which nearly sent me to the grave.
I tried all sorts of prescribed & nutritional supplements etc.

At last, Lorazepam 2.5mg x 2 at night (I would need 2, not 1 tablet!) gives me 7-8 hrs sleep with bathroom wake ups.
It's a member of the temazepam family, but longer lasting.

I'm not happy about being on the drug, but sleep is important to me.  Would love to get off the med.

Besides thyroxine (not a drug my hormone dr informs me, going by the dose measure), I take no other prescribed meds.
I use high quality nutritional supplements to maintain all my sjogrens symptoms except 'dry eyes/mouth' & insomnia.
Still searching to conquer these symptoms.......

BTW I was diagnosed in 1991 so have alot of experience with this nasty illness like many of you.

Lotus1

cccourt1942

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Re: Profound insomnia - what works?
« Reply #10 on: May 19, 2017, 05:59:03 PM »
Dawn: you don't put your age so I am going back to the age I began to have sleep disruptions.  Peri menopause/menopause.  Toward the end of menopause I had back trouble..sent to a neurologist for that evil test they do with the long needles..and while there was asked if I had any other prob.  The neuro was a woman about my age and when I said "sleep" prob..she pulled out her pad and Rxed 1/2 mg of Xanax.  She launched into she had the same prob.  I admitted to her it was THE worst on Sunday night.  She said that was HER worst night too...anticipating work on Monday!  I took this drug for about 4 or 5 years.  Only after I joined this forum did I begin to put events in order to realize I was suffering from Sjogren's symptoms even then.  Wasn't diagnosed until 71.

Fast forward to about age 68 or 69, and I made same statement to my GP.  Though I was retired, I continued to work contract labor in my field for 4 to 6 hours a day for 3 to 4 days each week.  The sleep interruption was due to dry mouth, getting up to empty all the water I drank due to SjS, and all the other stuff I was beginning to suffer as SjS ramped up to offer me every condition known to it.  Anyway, constant sleep interruptions AFTER I had gone to sleep effortlessly and slept about 2 to 3 hours.  If I didn't sleep, I could barely work. 

She offered me 1/2 mg of Xanax...and told me the SAME thing the neurologist had told me:  my inability to go back to sleep was more related to anxiety than to inability to actually sleep.  So true as I would wake up coughing --and after dx realized I was choking due to absence of saliva in my oral cavity.

I am 75 now, I keep an Rx @ .5 mg per night (as needed) and it saves my life.  BUT...I take the melatonin each night at 10:00pm no matter what. I take 3mg.  I've read others say they take more, but if I recall, the smaller dosage is recommended.  btw: my current  neurologist says he  can't sleep without melatonin!!  He runs a sleep clinic!!

My Internist does not like me taking Xanax and tried to get me on Trazadone.  I tried 100mg, then 300 mg...then he directed me to 500mg.  Nothing. This is basically an anti depressant.  The dosage he was willing for me to take would increase until I slept.  I thought he was crazy.  Actually, I'm still not sure about him.

SjS peculiarities can make you uncomfortable.  They are aggravating..and if I had bugs crawling on me in my bed it couldn't drive me any more nuts.  I have an itch on my auricle,  which the derma says is no more than dry skin.  She gave me 4 different creams before I used one which keeps the itch at bay.  They think that is insignificant....but it is major to me.  The dry mouth can cause one to actually choke..and that causes sleep disruption.  Burning tongue can make you unable to relax and go to sleep period.  The eye treatment almost always irritates one way or another at night:  gel is thick, gummy and drops burn.  Middle of the night bathroom trips are my worst sleep interruptions.  THEN I have to drink more water, put biotene on my tongue, THEN put OTC drops in my eyes, then (I sleep with this) put my eye mask back on...and those are just some of mine.  Those are nightly....and there are a myriad of other conditions which come and go which interrupt my sleep.

You may or may not suffer any of the above, but you will have your collection of symptoms which interrupt your sleep.  I am not saying drugs are the only answer.  I am saying two separate times in my life, this drug has been given to me...I've not increased it (regularly) during any of those years/stages. 

There is an afterlife and there may be a better drug available now.  I don't want to try a new one as I am quite satisfied.  Hope you can find a) your drug, and b) a dr. who is wise enough to Rx it. 
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

DP

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Re: Profound insomnia - what works?
« Reply #11 on: May 20, 2017, 06:58:00 AM »
Thank you everyone for your thoughtful replies! What a great community with folks willing to share your own experiences.

I already take melatonin at bedtime, I have been taking two or three chewable 500 mcg tablets for years. When I began having sleep issues I tried extended-release kinds & higher doses with no results. Valerian root and many of the herbal remedies can help me fall asleep for 2 hours, then I am wide awake.

I have taken a magnesium supplement for years, it is helpful for relaxing in the evenings.

I have been on Cymbalta/duloxetine for a year and take it in the mornings, so it doesn't seem to be related to my current issues. I was on trazodone 15 years ago when I had insomnia after my mom died, and it helped a little - BUT it dried out my throat so bad at that time I would wake up choking - and that was BEFORE I had Sjogren's!

I menopaused 10 years ago in my 40s and resolved all of those issues. It would seem odd for my thyroid to act up now, but with Sjogren's anything's possible, right? I will get into my doctor and get some bloodwork done and talk to him about my issues.

I will post again if I get any relief or any further info. What a frustrating disease Sjogren's is.

Dawn
Living with primary Sjogren's since 2015, SSB-positive, overactive bladder, insomnia. Currently taking Plaquenil, Cymbalta, Xiidra eye drops, Detrol LA, Lodine, Tramadol 3x week, Temazepam to sleep, ubiquinol (coenzyme Q), Omega 3 fish oils, Vitamin D, calcium, zinc.

Liz D.

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Re: Profound insomnia - what works?
« Reply #12 on: May 20, 2017, 01:47:40 PM »
DP,

Do you have any iron issues? Like anemia?  I was diagnosed with anemia last year and couldn't sleep and also suffered from restless leg syndrome.  Ever since I've been taking iron supplements, I've been sleeping better.  Not great, but better.

Hope you can get some answers.  There is nothing worse than insomnia!

Liz D.
53 year old female
Sjogrens Syndrome (diagnosed 2004, but problems started in 2000), Hypothryoidism, Asthma, Osteoporosis
Plaquenil 400 mg; Synthroid 100mcg; Evoxac, Asmanex, Flonase, Protonix 40 mg., Flonase, Prozac 40 mg. Naproxen 500 mg., Vitamins,

Sooki

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Re: Profound insomnia - what works?
« Reply #13 on: May 21, 2017, 12:37:47 PM »
Some people find relief from using glasses that block all UV and blue light.  (UVEX are $10 on amazon).  You wear them at least in the evening (6 or 7?) until you close your eyes to go to sleep.  The blue wavelength 497 has some interference with melatonin production.  I'm wearing similar glasses for a different reason (sensitivity) but find myself with uncontrollable yawning come bedtime.  I imagine that taking synthetic melatonin is not the same as producing it yourself - I've read that cortisol and melatonin are produced inversely so you wake up in the morning (cortisol) and sleep at night (melatonin).  If you're producing cortisol at night, taking a melatonin pill may not do the trick.

Have you had a sleep study done?  It can tell you different things about what happens at night.   The body knows that in the short run breathing is more important than sleeping and will do what it can to keep breathing.

 I found that when I lie down and relax my throat, my throat closes.  So my body has learned to half sleep so that I can keep my throat open.  The CPAP fixes that.  When I had tried sleeping pills before, my body would wake up more and aggressively fight sleep!    A different bit of help from a sleep study: My sister's sleep study showed that her oxygen levels go way low from a weak diaphragm (MS), so she was put on oxygen at night. 

In the long run, sleep is as important as breathing! It sounds like you've really been proactive in trying to find something that helps.  I hope you get some relief soon.
67 yo, Sjogren's, Lupus, Hashimoto's, Sleep Apnea, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Levoxyl, Xiidra, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, HydroEye, Paleo AIP, fish oil

Pepita933

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Re: Profound insomnia - what works?
« Reply #14 on: May 21, 2017, 01:52:38 PM »
Sleep has been one of the most critical needs I have to deal with pain.  Not enough sleep I feel terrible.  Saying that I have had so many sleep issues.  I went though a year of sleepless nights and catnaps during the day, afraid to drive the car for fear of falling asleep and hurting someone.  Then I started putting things together.  I started figuring out my meds were causing the problem.  I was taking a pain killer at night so I could relax enough to sleep...I had this for many, many years, and found I am the oddball and narcotics make me alert not sleepy.  I was taking Savella and amiltriptaline I went off the amiltriptaline and that helped, then finally I tried going off the Savella and sadly I slept once again. 

I don't know if I have restless leg syndrome that comes on with antidepressants.  I do know I can't take antidepressants anymore.  Do you ever feel like your arms get a feeling like they are jumpy, or have too much energy in them?  My legs were like that too.  Off of the antidepressants I don't have that.

My wish for everyone is to not have any of these problems.  But since we do sharing what has helped us hopefully can help you.
Sjogren's Syndrome, fibromyalgia, achalasia, osteo arthritis, degenerative disc disease, hypo thyroid,(no thyroid),