No relief from dizziness

[Deb 27]

I don't know what to do. I had a visit with the (only) local ENT and came away with nothing. I suppose I am going to have to go back to my PCP. I am still dizzy and have been for the past 8 weeks. It's not an awful dizziness or debilitating but it''s there and annoying. I feel unsteady at times. He said all my exams were normal. I was having a better than average day. My hearing was normal.
Sometimes it feels like my ears are stopped up, mostly the right.  He said it might be Meziere's disease. I think he should have ordered a CT scan of my heard or MRI at the very least. He also said it might be related to my auto immune dz. I think the fact that I have an AI disease would warrant an MRI of my head/spine.

Anybody have any suggestions for me? This is annoying and frustrating. Couldn't this be neurological or would the dizziness be different?

[Joe S.]

I do not think your doctor will provide any help until you can not stand. We have a dizzy and balance clinic in Minneapolis. Do you have some thing like that in your area that you can be referred to?

[SunshineDaydream]

Are you having dizzy spells/episodes or is it constant? Meniere's involves dizzy episodes or attacks, so if it's more constant it's likely not Meniere's.

Have you started any new medications recently that might have dizziness as a side effect? Also, I see you take synthroid. Have you had your thyroid checked recently? Hyper and hypo can cause dizziness or vertigo. How is your blood pressure? Low could lead to dizziness. Finally, is your diabetes well maintained? Dizziness can be associated with that, too.

[irish]

I will tell you that a cat scan and MRI never showed a darned thing when it came to my dizziness and imbalance. When one has an autoimmune disease the balance can be affected.
.
This is a neurological thing that just comes with the Sjogrens. Try looking up proprioceptive disorder and you will probably find a lot of information that applies to you. This is where our body has trouble knowing where it is in relation to our surroundings. This is what makes us feel off kilter and sort of dizzy at times. I have had this for years and notice it in varying degrees much of the time. One just learns to adjust and adapt to it.

I also have 2 other health issues that cause imbalance and trouble with dizziness so one of the 3 is in play at any given time. I have had allergies for years and I live with my head feeling so congested and plugged up as do my ears but I can't relate it to any allergy. I do believe it is related to autoimmue issues. I have been on 10 years of IVIG for my myasthenia gravis and can't say that it has helped my Sjogrens any. I have also been on prednisone for 10 years and this doesn't seem to help the balance/dizziness issues either.

I tell people it is like living with a level between my ears and trying to keep the bubble in the right place. There is no typical right place but my brain is always trying to keep me level with the universe. Good luck. Irish

[Sharon]

I can definitely empathise.
I also get the dizziness in varying degrees, sometimes quite debilitating.
Sometimes there seem to be triggers, but not always.

[Tharrell]

I was diagnosed with acephalgic migraines after suffering constant dizziness for two years that no one could figure out including the head of the neuro department of the previous clininc I went to. It took my new neuro ten minutes to diagnose me helped by the fact that I get regular migraines. It took,another year to find the correct meds that fixed it, in my case topiramate.

[Deb 27]

Thank you for the replies and sharing your stores!!! This is mostly a constant dizziness. I read some articles on Meniere's disease today as well and they are not dizzy spells. We had a neighbor when I was a child who had Meziere's and hers would come and go. Mine is there most of the time. It's awfully frustrating!!! Maybe asking my PCP for a neurology referral would help. I've had some strange sensations in the past week that might be  neuropathy, like burning/cold sensations in my hands and feet and some tingling today in my right foot. Something is going on.

[SunshineDaydream]

With the additional symptoms you mentioned, Deb, I agree it does sound neurological. I hope you and your doctor are able to figure it out soon so you can get relief. Being dizzy is awful and affects the ability to do many activities.

[irish]

Deb27, Do you ever feel like your eyeballs are rotating? Or have other people ever told you that your eyeballs are moving? There are some neurological issues that can cause the eyeballs to "wiggle" and I get this at times. I can feel when my eyes do this.

It will be interesting to see if some neurologist can get a handle on what is causing your dizziness? Good luck. irish

[Deb 27]

irish, no, I don't think my eyeballs are moving.

I will have to look and see if we have a balance clinic. It sounds like this is very common in SJS. This disease is like a pandora's box of unwanted gifts-:( Every day there is a new "present" we'd rather not have. It's tough and overall I feel I've been fairly lucky.

The medicine makes me so sleepy, I can't take it during the day. Gonna go back to my PCP this week to see what she says. The ENT did tell me to eat a low sodium diet. Gonna try that to see if it helps.

[Deb 27]

Update:  I went back to my PCP yesterday and she gave me some nasal spray. She said I had some fluid behind my right ear (which has b been hurting).  The useless ENT said my ears were fine, I knew different.  In just one day, my ears quit popping as much. I hope we are onto something here and it's allergies. It makes sense b/c we have 3 dogs, two of which are long haired. Just hoping this is the solution. My dizziness is better overall but after vacuuming  with my cordless vac this morning, I got real dizzy. There was a ton of dog hair under the couch.  Ugh! We adopted a new dog this summer and he sheds big time!! Ok, everyone have a great weekend!

[Pete0211]

Yay! Sounds like it might be it. We'll keep our fingers crossed!

[SjoGirl]

Oh I suggest considering the plaquenil as a possible culprit. I suffered from almost every side effect from that drug both times that I tried it. Within a week or two of stopping all of the issues went away.

I agree with others that a neurologist may be in order, mine has been a godsend.