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Sjogrens Topics => Living With Sjogren's => Topic started by: sunflower on June 15, 2020, 12:21:01 PM

Title: Insomnia, Meniere's Disease
Post by: sunflower on June 15, 2020, 12:21:01 PM
Hello again,

I haven't posted for a year or more, but my undiagnosed Sjogren's symptoms continue and new problems surface.  Increasingly I have trouble sleeping and it appears that is another common affliction with SS.  Insomnia has been a problem for me for years due to ongoing menopause upheaval (I'm 76) and insomnia in the family, so I've been hesitant to give it an SS label.  But this is worse.  In recent weeks I may sleep an hour or two, then sleep is gone, AWOL.  I'm wasted the rest of the day.  In the past, I've tried all the sleep hygiene steps, counseling, CBT for insomnia, antidepressants - it's been a battle for my doctor and me.  Sometimes I take a low dose of melatonin and then I get a few more hours. But exhaustion renders me unable to function.  I was so weak a couple of days ago I couldn't get off the couch. 

My reading suggests SS could be the culprit.  Suggestions or insights?

Also, an ENT suggests I have Meniere's Disease because of my tinnitus, ear pressure and hearing loss.  Well, my eyes and mouth have bit the dust so why not my ears?   :)   Does this sound like a Sjogren's problem?  It definitely falls into the autoimmune category.

Title: Re: Insomnia, Meniere's Disease
Post by: peggyb on June 16, 2020, 02:53:22 AM
Hi sunflower. I too have intermittent tinnitus and some hearing issues plus itchy ears. Always previously blamed it on NSAIDs including paracetamol and it's certainly worse when I take them. My mother was totally disabled by Menieres. Main symptom is vertigo and she used to 'faint' regularly. Her tinnitus was so bad poor soul. I would be sure unless you're very dizzy it's SS.
Title: Re: Insomnia, Meniere's Disease
Post by: sunflower on June 16, 2020, 09:21:45 AM
Thanks, Peggy.  I had troublesome vertigo until I saw a physical therapist who cured me right in his office at the first appointment.  He positioned my and turned my head suddenly in such a way as to move the crystals.  I wouldn't be able to do this at home.  Therapists have specialties and his was head injuries and disorders.  I don't know the exact terms of the treatment but on the web...

...Epley and Semont manoeuvres. These exercises will move the particles out of the semicircular canals of your inner ear to a place where they will not cause vertigo

My other symptoms prompted him to request I see an ENT.  My balance is still an issue but it's very different from the vertigo (mine was BPPV) which happened when I was lying down.  I highly recommend a physical therapist and the kind of help I received.
Title: Re: Insomnia, Meniere's Disease
Post by: peggyb on June 16, 2020, 11:25:32 AM
How very interesting  Sunflower. Mum ended up having some operation which helped/cured the vertigo (It was decades ago) but at the expense of her hearing. She had acupuncture a few times which helped the tinnitus to a certain extent. It was a great torment to her. Such a shame treatment for that doesn't seem to have moved on.
Best of luck with yours.
Title: Re: Insomnia, Meniere's Disease
Post by: araminta on June 17, 2020, 06:27:25 AM
I think the insomnia is probably related to Sjogrens, I have trouble with it too.    Magnesium has helped me get to sleep more quickly, though it doesn't guarantee a full night's sleep every night. 

I too have tinnitus, but I think that relates to bouts of labyrinthitis.   Those are quite well controlled with Betahistine.
Title: Re: Insomnia, Meniere's Disease
Post by: Deb 27 on June 19, 2020, 04:13:32 PM
I wonder if a lot of us don't have Meniere's. I got a "soft" diagnosis of it a few years back.

What has worked for me is a low salt diet ( avoiding processed and a lot of restaurant food) staying away from yeast, dairy and wheat. I find that these foods trigger the dizziness for me. I am pretty good if I avoid these foods.

I can certainly sympathize with your insomnia. I recently got some GABA supplement and that is helping me. Also (possibly) taking Nexium as I have had some nighttime issues with reflux. I started taking these both around the same time so I am a little unsure if it's one or the other or the combination that is working for me. This week, I've had 3 days of decent sleep which is the most that I've had in two years!!!! It was maddening and like you, I was so very fatigued. The GABA also seems to help me with waking up rested. Most SSRI antidepressants make my insomnia worse. I am going to try some citalopram as my doctor just prescribed it. Melatonin helped me a little but I was still waking up and not being able to go back to sleep.

I hope you can find something to help!!!!!!
Title: Re: Insomnia, Meniere's Disease
Post by: meirish on June 22, 2020, 12:44:49 PM
I have had insomnia my whole life after I got out of my teens. Having children probably didn't I am 77 and lost all my hearing in the right ear in 1996 or so and had tinnitus so bad in that ear. The left ear isn't was bad. I had the surgery in 1999 that helps the tinnitus some but my hearing was already gone so didn't make any difference.The right ear. The surgery did take away the balance in my right ear so I have about  4 different kinds of balance issues now. I had Vestibular rehab after my ear surgery and I learned exercises that improve the balance. One of the important things is to keep your legs strong and maintain your core strength. If our body isn't strong we can't learn to deal with the balance issues.

one thing I learned years ago was that if I stayed up really 3 AM or so I will sleep better and can often sleep more hours than I ever did in spite of the bathroom trips. I think my circadian rhythm or my bodies time clock is set different than most people. I am a widow and no responsibilities much of the time so I can do anything I want.

I will tell yoyo folks that I have had testing and have 2 blood antibodies that destroy hearing. They didn't do those tested 20 years ago but now they can. It is blood work. I am losing the hearing in my left ear for years and just got hearing aides last fall. I can now hear much better. I would bet that most people with or without autoimmune disease may have this type of hearing loss. I will probably be totally deaf in a few years but can't change it.

I have added so many things to my list of problems that I lose track at times and am getting sick of trying to keep track of it. But we put up with what we are given. I hope all of yoyo can find help for your insomnia. It sue helps not to have to toss and turn knowing that one has to get up at 5 AM to go to work. Meirish
Title: Re: Insomnia, Meniere's Disease
Post by: SjoGirl on June 29, 2020, 02:34:20 PM
Yes, I have both, my ears are screaming right now and I often wake in the middle of the night and toss and turn for an hour or more. I find that exercising helps me sleep as long as I don't do it too late in the evening.