dizziness with sjogren's?

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,

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

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.

 

 

 

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

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 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

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

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

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.

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.

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

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