dizziness with sjogren's?

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Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 5/14/2008 8:48 AM (GMT -6)   
Hi everyone,
 
I'm having issues with this dizziness stuff again.  I feel very off balance and sort of tipsy when I walk.  I was attributing it to the arthritis in my neck, but now I'm wondering if it might be related to my sjogrens.  Is this a common issue with sjogrens?  Anyone else have this problem? 
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Lynnwood
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Date Joined May 2005
Total Posts : 5758
   Posted 5/14/2008 10:09 AM (GMT -6)   
I have had itching ears directly attributed to Sjogren's, and I have had issues with dizziness. Since the Sjogren's was being watched by the rheumy, and the dizziness by my pcp, nobody every said they were connected but I thought they probably were. (Was between rhuemies at the time, so really no chance to get an opinion if it was sjogren's related or not.)

Have you had your ears checked? My pcp gave me something for the dizziness, and it cleared up after 10-12 days...but I think what she gave me was just to keep me from getting nauseas, not anything that would directly affect the ears.

My theory is that the Sjogren's had some drying affect on the fluid in the inner ear that gives us a sense of balance. It is well known that the ear fluid sometimes crystallizes and causes intermediate dizziness.

I would go ahead and ask about it soon -- my fear was that some kind of permanent hearing damage might occur -- also I was too dizzy to feel safe driving!

It's no fun to be dizzy,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
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Date Joined Feb 2003
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   Posted 5/14/2008 12:31 PM (GMT -6)   
Lynnwood, that is VERY interesting.  I did have my ears checked out, nose and throat too.  It all came back normal, but then I wasn't experiencing any dizziness symptoms at the time of the testing (doesn't that always seem to happen!).
 
Thank you for explaining what this might be.  It totally makes sense.  I get these episode once every month or so.  They last anywhere from a whole day, to just a few hours - but always when I first wake up.  It never comes on as the day goes by... 
 
The dizzies are gone now.  So this episode lasted about 5 hours.  Quite short. 
 
I'll definitely bring this up with my rheumy, and my new pcp.  I see her at the end of May. 
 
I feel too unsafe to drive as well!  I cancelled my plans to meet with a friend this morning because I didn't feel safe enough to drive.  Brutal! 
 
I wear earplugs to bed every night (snoring hubby).  I wonder if those could contribute? 
 
Thanks so much for your insight Lynnwood. I feel better knowing what this might be.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 5/15/2008 2:48 AM (GMT -6)   

No Sjogerns dx, but I definately have dizziness. I actually was trying to read back of previous posts about dizziness and syncope a minute ago. For the past few years, I feel like I have a bad sense of balance. Pretty much like you said. I dont usually notice it unless I am walking next to someone or a wall and nudge into them/it. I guess vertigo is a better word for it.

Today it kind of freaked me out. I was buying a new case for my phone and blacked out for half a sec and grabbed on to my bf, and almost passed out. Right after I was really dizzy, and hot, and everything looked kind of hazy. We had just gone out for lunch so I am not sure what caused it. I still feel kind of off. Not sure if it is related to the dizziness/vertigo or not. That was the first time that had happened and I definately experience what you are experiencing. Kind of coincidental you posted on that today! I was going to start a new post about it but saw yours.

Another interesing thing is that my mom and a couple of my aunts have had vertigo a couple times. It must be hereditary. Anyhow, my mom had an older Irish nurse who told her to take a shot of whiskey whenever she gets it. It worked twice, and never again. Wierd huh? There are also postural techniques you can do to help aleviate some of the vertigo and drain the fluid out of your ear. Do a search for "postural vertigo treatments" I think that may bring some exercises  up. I hope that helps!

Melissa
Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Celebrex 200 mg, Plaquenil 400mg, Ultram PRN


redrose77
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Date Joined Sep 2005
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   Posted 5/15/2008 3:53 AM (GMT -6)   
Do you every get really sick to your stomach with it? Also do you hear odd sounds like roaring when you are having bad dizzy times? DO your ears ever feel like they have been stuffed with cotton inside- very full and does your hearing vary from day to day? I ask all this because I have dizziness with these kinds of issues and my rheumy suggested it might be ménière. Every ENT I have seen acts like I am crazy or making up my symptoms. But I figured I would throw that one out there because I think there are treatments that can help and it is an autoimmune condition that affects the fluid inside the ear.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 5/15/2008 9:01 AM (GMT -6)   
Hey gals,
 
Well it seems to be pretty common amongst us all doesn't it? 
 
I don't get nauseted with mine, or a feeling of an upset stomach.  Sometimes it gets worse if I position my head downwards.  Which led my doctors to believe it was an inner ear thing.  But I've had all the tests for inner ear problems, including Menieres. I do get those roaring noises and high pitched sounds that you mentioned Redrose.  But I don't usually have the dizzy symptoms with those.  Weird eh.  The ENT doc says I'm "normal".  Hahaha, yeah right.....
 
Melissa, I had a couple incidences of that type of severe vertigo in the past.  The first episode was horrific.  Scary. I didn't know what was happening.  Two years later I had the second incedent and unfortunately, I was having a full blown stroke.  So take the vertigo feelings seriously.  You could be having mini strokes and not realize it.  I'd tell your doctor about what happened to you.  Especially if you think you almost blacked out.
 
 
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
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Date Joined Jan 2005
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   Posted 5/15/2008 3:00 PM (GMT -6)   
Hmmmmm . .. I'm having dizziness too. Mine is not positional (happens any old time) and my glands are a bit swollen. Ear hurts a bit at times and eyes are dry. Thought it all might be sjogrens

Mom was just dx'd with vertigo (she had dizziness upon lying down or getting up) and she was given an exercise to do. She was warned that it could cause extreme dizziness and nausea. She repeated the exercise about 3x a day and has cleared the dizziness. She did experience that nausea but knew that meant it was working.

So many different things can cause dizziness . . . its interesting (sorry) reading all the different types of dizziness we experience.

Sorry to all who are struggling with this.

Ginny . . . I never thought of a stroke with the momentary blackouts! Yikes!! Thanks for the warning!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


mom46
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Date Joined Dec 2004
Total Posts : 8198
   Posted 5/15/2008 8:48 PM (GMT -6)   
Hi Ginny,
   I have had all these symptoms since my equalliburim was damaged 9 years ago. It is so annoying with the constant ringing/roaring in the ears, balance issues, dizziness and hearing loss. I hope this gets better for you and everyone else experiencing this soon.
   Take care and keep us udpated. You are in my thoughts and prayers.
                                                         Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 5/16/2008 2:58 AM (GMT -6)   
That is scary Ginny! I am only 26 so I hope its TIA's (not that age is any sort of immunity). That whole stroke thing ran through my mind last night when I was trying to fall asleep. I will definately mention it to my MD,even though sometimes he is so blase about things!

Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Celebrex 200 mg, Plaquenil 400mg, Ultram PRN


Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 5/16/2008 9:28 AM (GMT -6)   
Hi Melissa,
 
I hope it's NOT TIA's that you're having.  There's no such thing as a "small stroke".  They're all considered equally damaging and equally as serious.  A TIA is a huge warning that something is very wrong.
 
I had my first TIA at 26, then the full blown stroke at 28.  Have you been tested for APS?  Antiphospholipid Syndrome?  It's a protein that lupus or connective tissue diseases create that makes the blood thick and sticky.  That is what caused my TIA's and stroke.  I am on life long blood thinners (Coumadin) to prevent future problems.  It's a simple blood test that will tell your doctor a definite "yes" or "no".  No guessing with this syndrome. You either have it or you don't!  Get it checked.  Another test that is parallel to APS is the Anticardiolipin Antibody.  Get that one checked too.
 
Do this soon!!!  Like next week! :-)
 
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
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Date Joined Sep 2005
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   Posted 5/16/2008 10:17 AM (GMT -6)   
Also the lupus anti-coglutent (sp) odd but a positive test on this means you have increased risk of clots and all the problems that go with them. I take baby asprin because I have had low positives on lupus anti-coglutent and anti-cardiolipid antibody tests. My results were not diagnostically significant but given how many miscarriages I have had my rheumy thinks I may have a slightly increased risk of clots, thus the baby asprin.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 5/16/2008 8:15 PM (GMT -6)   
I Ginny, wow sounds like you need to get this checked out soon. I don't have anything to offer as far as advice. Just lots of prayers. I get dizzy alot but I think mine is from not having enough oxygen because of my lung problems.
Just wanted to let you know you in my thoughts and prayers. Please get this checked out soon and let us know.
love ya
carol
God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 5/16/2008 9:08 PM (GMT -6)   
Thank you Carol.  Your encouragement is always terrific!
 
I've been looking into this conundrum for about 2 years now.  It doesn't seem to be neurological, cardiac, inner ear, nose or throat.  All we can think of is the arthritis in my neck, the lupus, or sjogrens.  It's one of those, or maybe all of them!  Might be something I just have to live with..... It's totally gone now.  The episodes come once or twice a month or every 6 weeks, and only last up to 10-12 hours at the most, and then it's gone the next day.  Very weird.  As long as it doesn't start becoming more frequent or last more than one day, I can work it out I think!
 
Oh gee...... I just had a revelation here.  I think they happen a day or two before my period starts.... This one did.  I can't remember last month what happened... I'll keep track!
 
Thanks again Carol,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 5/17/2008 1:07 AM (GMT -6)   
Yup, they check anti-cardiolipins, anti-phosphoid, and lupus anti-coag. And cold agglutins. I think if that is positive it causes clotting problems too?? Not sure..... All was clear there. I hook myself up to the ekg machine at work every year or so too, and thats always normal too. Maybe something hormonal? That was the first thing I thought. Thanks all for the advice. We will see what kind of mood my MD is in. Somedays all he orders is some blood, others he wants me to spend 6 hours getting tested at the hospital.

And 26 Ginny! Thats terrible. I hope you have no residual deficits. Did you say you take aspirin too? Or just coumadin? Have you had it checked lately? It your INR gets too high or you have too high of aspirin levels in your blood you can cause dizziness and tinnisitis. Even diet changes can affect your INR levels.

Take care!

Melissa
Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Celebrex 200 mg, Plaquenil 400mg, Ultram PRN


wshw
New Member


Date Joined May 2007
Total Posts : 3
   Posted 5/17/2008 7:09 AM (GMT -6)   
Sounds like BPPV to me. It is a terrible thing to live with. I have it. It is called begnign paroxymal positional vertigo. It has to do with crystals in your ear. If it seems to be positional, tell your doc to check you for this. They can diagnose it by watching your eyes. They involuntarily move when head is tilted to one side or the other. Physical therapy is very successful, yet I have had none so far. It is something that can hang on for months, leave, and return at any time. Do some research and ask your doc.

Wendy

Ginny
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Date Joined Feb 2003
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   Posted 5/17/2008 8:54 AM (GMT -6)   
Melissa,
 
The stroke left me with a seizure disorder.  Simple partials. No blacking out or convulsing - instead I get deja-vu sensations, weird smells, and I and an upset stomach.  Amazing thing is that I haven't had a seizure since last June.  That's when I had an anaphalactic (sp?) allergic response to a new medication.  After all that, the seizures have disappeared.  I do have one side of my face that is slightly less "elastic" than the other. I notice it when I smile. It's barely noticeable.  I'm glad your tests came back okay!  That is a relief.
 
Wendy, it's not BPPV.  I was checked for that.  I've been checked for everything under the sun with these symptoms. Thanks for the ideas though!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5758
   Posted 5/17/2008 9:11 AM (GMT -6)   
10-12 hrs & maybe before periods?

I'm still betting on Sjogren's -- if I flare a little (like we tend to do with periods) is when some of these things occur. A little ear inflammation can easily cause a little bit of "off" in the ear fluid -- like a few crystals forming -- that cause a bit of dizziness.

As others said, there are positional exercises that are supposed to help -- they might have helped me a little & maybe helped more if I did them more often :smail: My last dizzy episode was by far the longest -- about 8 days -- and I was under stress & had my period, which is a small flare for me.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


cured4real?
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Date Joined Dec 2005
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   Posted 5/18/2008 10:01 PM (GMT -6)   
Hi Ginny, you're on so much blood stuff that I wonder if your blood pressure doesn't have something to do with it. My son has orthostatic low blood pressure and when he puts his head down he gets dizzy. I had a lot of problems with dizziness when they put me on blood pressure medicine and diabetes medicine, and get sudden drops of blood pressure below 80/60 that may last a few hours and make me very dizzy and feel bad.

If you don't have one, you might want to invest in a blood sugar test kit. My high blood pressure was directly linked to my blood sugar, as was my low blood pressure, and the dizzy spells when either high or low. Diabetes makes your blood pressure go all over and your sugar too when it sets in.

You can have low blood sugar or high blood sugar, and I have both, but taking glucophage evened it out to a perfect number and reduced the need for blood pressure medicine. Many doctors miss prediabetes and just slap people on blood presure medicine and then if they do have blood sugar ups and downs, the blood pressure medicine makes the lows really extreme.

Certain brands and types of prednisone have also caused this problem with me, including the ringing and roaring and dizziness and plugged ears feeling. I can only take one kind, and the doc and pharmacist know it. Also, when my glands under my neck swelled, they caused the eustachion tube to the ear to become congested or plugged up somehow and I had to take an antihistamine for a day or so to open it back up.

I think that anyone with lupus or any ai disease should be tested often and thoroughly for prediabetes and diabetes, and if they give us prednisone, they should prescribe a blood sugar testing kit. Mine was $18 dollars and had full instructions, the strips and lancets were more. But I often test my own and my families blood sugars when they feel ill. My son's is frequently low, my boyfriends high but the usually even out with dietary changes. Just knowing this can help you eat better and that may help some.

I would definitely talk with your doc about all that and test your blood pressure often when you feel like that and it would be good if you could test your sugar too, then you would know both.

I hope you feel better and that you get it straightened out. The swelling under the throat and in salivary glands, the parotids especially and the submandibulars can cause some changes with the ear, just like in strep throat and other throat infections. Also, I get dizziness with the arthritis in my neck and found rolling up a hand towel and wrapping it around my neck for a brace to hold my head up helps sometimes.

I hope you feel better and pray that you get answers and relief soon and that it is nothing serious.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


lucysgd
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Date Joined Jun 2008
Total Posts : 663
   Posted 6/15/2009 10:16 PM (GMT -6)   

I'm just chiming in with occasional and short-lived dizziness/vertigo.  Usually doesn't last more than a day or day and a half.  It's happened for years and I've always chalked it up to sinus problems, (long before dealing with all the AI stuff)but I finally mentioned it to my PCP in March and he Rxd Meclazine in case it happens again.  I have complained of ear pain - shooting nerve pain inside the ear as well as "cartilage tenderness" on the outside.  These spells also last a day or two and subside.  The doc looks in my ears and proclaims them to look fine.  And I'm usually not having the problem when he is looking.  The ear pain is relatively recent and seems to coincide with sore throat, tender neck nodes and some zingy nerve sensations in my face on that side, so it makes me think it is an element of flare - usually not feeling really great, with other symptoms around the same time.  No more periods for me - so can't comment on the timing/hormones.

I picked up my refill for Plaquenil today though and noticed this time it had a yellow sticker that said this drug may cause dizziness - which it doesn't always - depends on who is filling the Rx, I guess.  Anyway - don't know if this could be part of the equation or not for some.  I think it's lupus/sjogrens' related myself.

Think I'll look up the exercises, though....

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


kertslittlebird
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/16/2009 11:24 PM (GMT -6)   
Hello everyone, just started this forum today. Autoimmune Inner Ear Disease is what I have and been diagnosed with it. Roaring sounds that would actually wake me up at night. It is also the first thing I hear upon waking. And for the dizziness. You know that feeling you get when you ride in an elevator and it has just reached the floor. Sort of up and down motion. Well I got those movements all day long. Or trying to back my car out of the drive way had me spinning like a top. My face felt like it was being pushed into my ears. Some days my hearing was bad but other days it is super sensitive. Medicines that help, prednisone and methotrexate. I also had good results with Tramadol.
I have some signs of lupus, I have been told I have Sjogren's and RA and Hashimotos thryoid, with of course your basic high blood pressure, anemia, and an ever rising blood sugar level.
Medicines I take Synthroid, prednisone, blood pressure pill, folic acid, plaquenil, flexeril, tramadol and sleeping pills. Also the once a week injection of methotrexate. I am currently trying clonopin for anxiety and lexapro for being sad.

NOGLUTEN
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/17/2009 10:01 AM (GMT -6)   
Hello everyone,
 
I do get dizziness on occasion and ringing and "silence" on occasion in my ears.  I also get shooting pain in my ears on occasion but have chaulked it up to life and have never asked the ENT about it, maybe I should.  I have been diagnosed with sjogren's for about 15 years and was recently diagnosed with Celiac disease.  I was diagnosed with Sjogren's originally because I had cronic tearing of my eye lens and it was discovered it was caused from underactive tear ducts.  Looking at your posts for this forum makes me wonder if any of you were tested for Celiac disease since it is linked to Sjorgren's Lupus and Crohns.  I have a lot of the symptoms associated with those diseases but have not been checked for them.  I have however had the privilage of a few colonoscopys and other intrusive type checks because of IBS.  I was having major dry mouth issues (like the dry tongue sticking in AM) and my snoring was becoming horrendous.  Since I have gone gluten free my snoring has decreased and is almost non existant and I haven't woken up with a dry mouth in over a month.  I was shocked to learn about the symptoms associated with Celiac disease and I am hoping that some of the other symptoms I have will also clear up the longer my stomach is allowed to heal.  Celiac can cause malnutrition symptoms and thus the list is quite long.  Thyroid and RA and joint pain are on the list, folic acid deficiency and fibromyalgia symptoms are also linked.  Although I have been labeled as IBS and Sjogrens all these years, a doctor never considered testing me for Celiac until now.  I developed DH in January and it took until June to get a diagnoses which relieved the symptoms, gluten intolerant.  Now that I have avoided the Gluten, my rash is gone and so are the IBS symptoms.  The sensation of having dust always in my eyes seems to be subsiding and for the first time in years, I actually was sweating the other day.
 
I hope this is helpful.

Marlee2
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Date Joined Aug 2007
Total Posts : 6067
   Posted 6/19/2009 3:45 PM (GMT -6)   

Hi everyone, I'm normally on the fibro forum.

This is interesting!!! I blame everything that happens to me on fibromyalgia but I get dizzy, lightheaded and nauseous a lot and my GP said it sounded like an inner ear thing but he didn't say it could be the Sjogren's. I never thought about it affecting my ears. I think it is time for the ENT doc. 

I am so glad Peter started this forum and then I forgot about it for a couple of days, that is fibrofog.
 
Marlee


Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin

Post Edited (Marlee2) : 6/19/2009 2:50:08 PM (GMT-6)


pre-med UCTD patient
New Member


Date Joined Aug 2009
Total Posts : 10
   Posted 8/30/2009 2:02 PM (GMT -6)   
Ginny--
I also get dizziness and I have UCTD and small fiber neuropathy (due to autonomic nerve damage due to the AI CTD). I work in a neurological office and we have OTs that work solely with patients with dizziness, vertigo, and gait problems due to dizziness and vertigo.
The OT at my office says that my dizziness is a vestibular problem caused when I move my head from side to side. She has me doing some home exercises in which I take a spoon and move it from side to side or up and down or diagonally and track it with my eyes.
Is it possible that your autonomic nerves are damaged? It is often caused by an AI CTD. My other symptoms besides the dizziness are that if I bend down or squat, I feel very dizzy when I stand up, like I will fall over. And of course the squatting makes my legs go numb. I pretty much always feel light headed, so I have to get up from chairs, the bed, etc VERY slowly so that my BP can equalize. This is called orthostatic hypotension. Another member was discussing this above.
In the beginning I really thought the lightheadedness was due to low blood sugar or something. I remember in middle school when I complained about it to my PCP she told me to bring snacks to school. (She didn't check my blood sugar or anything though...). In 2006 it got so bad that I had one my diabetic coworkers check my blood sugar with her meter for a week, and everytime it was fine.
Anyways, maybe this helps. Hope you figure it out! I think you're right that ultimately its due to the AI CTD. You should try to find an OT who specializes in dizziness. They treat all the potential causes (BPPV, vestibulopathy, the crystals in people's ears, etc).
Take care!

TORTLE
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/11/2009 3:25 AM (GMT -6)   
I have Sjogren's and Fibromyalgia and get the dizzies and nausea. Also itchy ears which is more from dry flaky skin I think. It is so hard to know which causes what at time and when most of our GP's don't know for sure it makes diagnosing one self a bit difficult

TORTLE
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/11/2009 3:28 AM (GMT -6)   
I belong to a local support group mostly with Fibromyalgia, Sjogren's syndrome, Lupus, Chronic fatigue. Also two of our group have scleroderma and this site does not mention it. It is hard to get info on this auto-immune disorder and would appreciate any input.
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