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shannashimmers
08-22-2010, 10:19 PM
Just wondering if any of you have this? I have had pulsing in my right ear now for 2yrs. I have seen several ents and had mri/mra done all which showed nothing. Iam wondering if someone there could be a link to lupus with this. It is really hard to live with

magistramarla
08-23-2010, 08:12 PM
I was dx'd with Meniere's Syndrome long before the AI problems. Lately, my rheumy said that they could be connected - she called it Autoimmune Inner Ear Disorder.
May be this information can help you.
Hugs,
Marla

shannashimmers
08-24-2010, 10:37 AM
Thanks for responding. Thats interesting I have read about that. Its been a scary thing because of the fact that it can be a blood vessel issue or brain tumor. So far the MRI/MRA has shown nothing and the only thing left I can do is get a Angiogram which Iam scared to death to do.

jmail
08-25-2010, 04:12 PM
When I had issues with my ears this past spring, I was referred to a "balance institute", where they have all sorts of resources and testing they can perform on you in an attempt to make a diagnosis. My tinnitus, vertigo, dizziness, earaches, headaches, etc., were all blamed on a bout with Menniere's. I was told it may or may not have been caused by lupus. I was in the middle of a flare, so *I* think that's what it was. Anyway, they can do simple tests on you, mostly by just blowing warm & cold air into your ears, and also by putting ear buds on you and having a machine do a bunch of "beeps" and other noises. Only with the "real" hearing test, where you have to hit a button telling when you can hear something, was my input required. Otherwise, the tech & doctor can read what they get back from your ears in the tests and see what's possibly going on... Besides everything else, they found I had rocks loose in my head... tic

magistramarla
08-25-2010, 08:15 PM
I've had the same sort of testing as jmail - several times. In Meniere's, there is excess fluid in the inner ear. I find that really ironic, since I have Sjogren's and I'm having all sorts of problems with dry eyes and dry mouth. My body just can't seem to get moisture levels right anywhere!
If I were you, I'd see an otologist and get tested for Meniere's before going through an angiogram.
Hugs,
Marla

shannashimmers
08-25-2010, 09:14 PM
The first doctor I went to thought I had Eustachian Tube dysfunction which the ENt said I didnt. I have had lots of hearing test done and I had some hearing loss in the ear that is bothering me. I even had a tube put in my ear which didnt help either. The Ent I went to thinks I have a high riding jugular bulb which doesnt make sense much because you are born with those and I just recently within the past few years had the problems start. He never said anything about the Menieres so I guess that something I could look in to. Iam terrified to have an angiogram but at the same time Iam scared that I could have something being looked over.

Mommyof1
08-27-2010, 09:45 AM
I find all this interesting as I have constant tonal tinnitus & intermittent pulsatile tinnitus with orthostatic hypotension. I saw an ENT for a sinus and allergy workup last year due to allergy/sinus symptoms not being relieved by the regular medications. They did allergy testing which turned out im mildly allergic to ALOT & moderately allergic to soy and barley as well as walnut trees. Anyhow, they also did an x-ray of my head and said I have a deviated septum and from what I hear you dont get those unless you have broken your nose before?? I have never had that happen so this didin't make sense to me. Also, I had maxillary sinus inflammation and was at the time on Flonase for my symptoms so it obviously wasn't working. We tried Zyrtec and Singulair both of which gave me side effects and aggrivated my anxiety etc so I cannot take them. I was on Dexamethasone spray 3 different times for a few weeks and it was ok while I was on it but then shortly after stopping it things would return. I have frequent sore throats & sinus/migraine type headaches. With an mri once way earlier last year it showed some mastoiditis but my dr didn't seem to think it was enough to treat it....not sure why. Other than that I have had tubes in my ears(age 3)due to frequent ear infections but I never had issues with the pulsatile stuff till around 15 when I noticed it and then around age 18 when it was constant and would keep me up at night. It makes me wonder if this could be a possibility for me as well? After the pregnancy they are going to do an MRI/MRA w/contrast due to the seizure I had right before I found out I was pregnant and due to neurologic symptoms ive had such as neuropathy, headaches, severe brain fog, etc. They also want me to be evaluated for IBD by doing a colonoscopy & endoscopy(eww!)...I dont know if having either of these would predispose me to Meniere's at all but jw if anyone has an idea if it could all be connected? Sorry for such a long post but I am lost lol

Oh, I also have a heart murmur they said I was born with but was told it went away by the time I was 2. Funny thing is at 15 they told me I had one again....I have a lot of palpitations with it and discomfort so I wasn't sure if this could have something to do with any of this as well due to impairment of blood flow?

SandyR
08-27-2010, 10:03 AM
I find all this interesting as I have constant tonal tinnitus & intermittent pulsatile tinnitus with orthostatic hypotension. I saw an ENT for a sinus and allergy workup last year due to allergy/sinus symptoms not being relieved by the regular medications. They did allergy testing which turned out im mildly allergic to ALOT & moderately allergic to soy and barley as well as walnut trees. Anyhow, they also did an x-ray of my head and said I have a deviated septum and from what I hear you dont get those unless you have broken your nose before?? I have never had that happen so this didin't make sense to me. Also, I had maxillary sinus inflammation and was at the time on Flonase for my symptoms so it obviously wasn't working. We tried Zyrtec and Singulair both of which gave me side effects and aggrivated my anxiety etc so I cannot take them. I was on Dexamethasone spray 3 different times for a few weeks and it was ok while I was on it but then shortly after stopping it things would return. I have frequent sore throats & sinus/migraine type headaches. With an mri once way earlier last year it showed some mastoiditis but my dr didn't seem to think it was enough to treat it....not sure why. Other than that I have had tubes in my ears(age 3)due to frequent ear infections but I never had issues with the pulsatile stuff till around 15 when I noticed it and then around age 18 when it was constant and would keep me up at night. It makes me wonder if this could be a possibility for me as well? After the pregnancy they are going to do an MRI/MRA w/contrast due to the seizure I had right before I found out I was pregnant and due to neurologic symptoms ive had such as neuropathy, headaches, severe brain fog, etc. They also want me to be evaluated for IBD by doing a colonoscopy & endoscopy(eww!)...I dont know if having either of these would predispose me to Meniere's at all but jw if anyone has an idea if it could all be connected? Sorry for such a long post but I am lost lol

Oh, I also have a heart murmur they said I was born with but was told it went away by the time I was 2. Funny thing is at 15 they told me I had one again....I have a lot of palpitations with it and discomfort so I wasn't sure if this could have something to do with any of this as well due to impairment of blood flow?

Hi Mommyof1,

I too suffer from chronic sinusitis and am allergic to Zyrtec. Singular does nothing for my symptoms. Have you tried a Neti Pot? They work wonders for me. I can't use it everyday but as soon as I feel a little out of sorts I use one and if I am vigilent about using it at the first sign of infection I can usually keep an entire infection away. Also - I use a dehumidfyer because I live in a basement apartment that tends to get too humid - I am sure this is attributing to my sinus issue as well - but my ENT says a humidifyor would be better if I lived in a drier house. BTW - I also have IBS and have been told that I did and then I didn't have a heart murmur so we seem to have a lot of similarities. I don't know how they are all related but I really think then when your living with an autoimmune problem all of these things are somehow related.

Sandy

magistramarla
08-27-2010, 10:09 AM
I have a daughter who has had allergies and asthma since she was little and she has now been dx'd with IBS. I think Sandy is right. All of these autoimmune things are related. The sad thing is, when I mention this to docs, they scoff at the idea. We are curious and smart enough to see these connections - why can't they?
Marla

shannashimmers
08-28-2010, 07:56 PM
Mommyof1
I have not been diagnosed with lupus yet but undergoing testing. I have had the Mri/Mra with no findings. I also have a deviated septum which my sister and mother does to and none of us have broke our nose either. The pulsatile tinnitus started about 2 yrs ago for me and makes me crazy. Mine is strange that it gets better when I turn my head certain ways and when Iam lying down which is worse for most people. Also I can press in where my jugular is and make it stop, I also can put a ear plug in my ear and I can not hear it at all which is strange to me. Has yours been worse since being pregnant? Mine started after taking rounds of fertility med dont know if there is a connection or not. I have had several miscarriages and thats when the lupus stuff started coming up for me. Iam scared to get pregnant because Iam thinking I might have a AVM or something and pregnancy makes it worse. It is very frusterating its one thing after another and Iam ready for some answers so I can once again try and have a baby.

Mommyof1
09-07-2010, 10:07 AM
Actually my symptoms of lupus have really calmed down since I got pregnant except for in the very beginning and here recently which I think is due to hormones. In the beginning I had a seizure after 7 yrs of being seizure and med free and they think it was due to hormone flux due to the pregnancy itself. After the 1st trimester I felt really good and they say your cortisol(natural steroid)production goes up during pregnancy so(like prednisone)I think it has a lot to do with why I hadnt been suffering from lupus crap for a while. I was fine other than severe fatigue up until close to a week ago and started getting some lupus symptoms back but not all of them(rashes, fatigue, arthritis pain, etc). I also had a strange episode a few nights ago I wasn't sure what to make of that I put a seperate post about on here. My rheumy has thought since the beginning I would be fine during the pregnancy but afterwards would bring on symptoms and possibly severely. My lupus started showing itself after I had my son back i 2007. I had had symptoms for years but that birth and then getting my wisdom teeth removed in 08 & getting what im pretty sure was mono was the fuel to the fire for me. Well see what happens. Good luck with getting pregnant! I think hormones affect us with AI diseases way more than others. Hope you are all well. *hugs* -Lupie Britt

pandagirl
09-07-2010, 02:52 PM
I occasionally get pulsating sound in my ear..never connected the dots. Thanks, I am sure it is part of the Lup. I am going to tell a friend, she does not officially have Lupus(it's in her family) but has had that ear complaint for a long time! Amazing how we all have the same "stuff".