Hello. I've been reading here, but this is my first post. Everyone here seems very knowledgeable and I was hoping maybe someone could help me out.
I have been having vertigo, tinnitus and some mild hearing problems for the last 5 months or so. I also have an autoimmune disease. My rheumatologist diagnosed me with rheumatoid arthritis a year ago but has since said it could be lupus. Right now the treatment would be the same, so I am trying not to worry too much about the label.
Today I saw an ENT and learned my ENG from a couple of weeks ago was abnormal. I was hoping someone might be able to give me more information or lead me to a good resource to learn more.
My ENG results state: "Caloric irrigations were consistent with a significant bilateral weakness." It also states: "The presence of bilateral weakness are non-localizing findings consistent with either central or peripheral pathology."
The doctor I saw today feels I have something autoimmune going on causing this. He is referring me to Dr. Rauch at Mass. Eye and Ear. He seemed quite concerned. He seemed to be implying I could have or could end up with Autoimmune Inner Ear Disease. He mentioned Meniere's is still a possibility, but something in the results or my history seemed to make him think this is less likely.
I thought AIED happened suddenly with no warning, but he said sometimes there are other symptoms before the sudden drop in hearing. I showed mild SNHL in one ear on one test and showed normal on a test a month later. So on paper my hearing seems ok. He seemed pleased with that. But I have had two episodes in the last 6 weeks when I have awakened with no hearing in one ear and this lasted about 1 minute. A couple of weeks later it happened in the other ear.
Anyway, I'm sorry for being so long-winded, but I was wondering if anyone had any ideas or input about all of this? Does anyone have any information about other autoimmune problems with the ear other than AIED or Meniere's?
It is a page from the Mod approved Northwestern Univ web site located in the "sticky" which is the first page on the board...
I know you asked about info on things other the AIED..Meniere's---however the paper/info presented discusses many others, i.e:
..."The immune system is complex and there are several ways that it can damage the inner ear. Both allergy and traditional "autoimmune disease" such as Ankylosing spondylitis, Systemic Lupus Erythematosis (SLE), Sjoegren's syndrome (dry eye syndrome), Cogan's disease, ulcerative colitis, Wegener's granulomatosis, relapsing polychondritis, rheumatoid arthritis, and scleroderma can cause or be associated with AIED. Another multisystem disease, Bechet's, commonly has audiovestibular problems. Allergy involving the inner ear is traditionally felt to be food related, but there is presently no agreement as to the importance of food allergy.".
...."Not all individuals with bilateral sensorineural hearing loss have autoimmune disease. Genetic defects, infections, toxins, advanced age, noise exposure, and conditions of mysterious origin all account for some cases."...
Each case/disease---listed has a "hyper-link" to the disease/defect/infection, etc...discussed/ID'd/highlighted...
I have an autoimmune thyroid condition called Hasimotos Thyroiditis (not sure of the spelling?). This all started at the same time as my ear problems. I still think this autoimmune condition has something to do with my dizziness, tinnitus and terrible ear pressure or fullness but my Drs. do not think either one has anything to do with the other.
I just thought of a question for you. Do you have any problems with your eyes? Mine always feel like they are being squashed. I was just wondering if it was the pressure in my ears making my eyes feel like this.
Yes. It is in both ears. It stinks today too. They are very clogged. My eyes feel very weird. Kind of squashed together and very tired. It is hard to describe, it just isn't right. My eyes always feel tired too. Maybe it is just from me crying too much.
I know this probably won't matter, but at least it is only one ear with you. That was stupid, huh? I hate when people say, well at least it isn't fatal. Kind of the same thing I just said. The bottom line is it robs you of your life.
If this would ever go away, I don't think there could be much of anything else that could upset me.
Do you ever find they feel less clogged when you are outside? My symptoms seem a little better when I am outside.
Jill, if we ever get rid of this crap, we will have to go out together and celebrate. We'll drive; no airplanes for us Funny thing is, I don't even drink because I don't like how alcohol makes you feel. It is ironic, I've been living like this for months.
I feel so bad for you and wish there was something I could do to help you. I am thankful I only have this in one ear, so that's not stupid at all. I have people tell me the same thing like, "You don't have cancer" and I am thankful for that too. But I guess they just don't understand.
Yes, mine is better outside too, not so much pressure or tinnitus but I don't know why that would be?
I would love to celebrate with you but you are right we would have to drive. I don't think I would ever fly again. We have got to get over this soon. I sure don't think we will have to live like this forever.
I sure hope you are right. You sound a little better today; I hope that is so. You made me feel a little better after talking to you so I should try and get off the boards before I read something negative.
Strange about being outdoors. I know I don't really hear the tinnitus when outside and I think that is one reason why but I can't explain the pressure being less. Things that make you go hummm!
Anyway, have a good night. I hope we wake up tomorrow without this nightmare.
I have hypothyroidism too. Although I'm not totally sure it's Hashimoto's. My antibody tests were negative two years ago and I don't think they've been checked since. My gp felt that was mostly likely what was affecting my thyroid given my family history (sister has it) and other autoimmune problems.
Have you had a thorough work up for other autoimmune stuff like ANA, etc? Do you have any arthritis symptoms or severe fatigue, fevers, rashes, etc? Of course the Hashimoto's alone can affect balance.
All of my symptoms starting pretty much at the same time as well, a few years ago.
I'm sorry you are dealing with this. And you too, Gloria. How are you both doing now? Have you found anything that helps?
I have not has a thorough work up for any other autoimmune stuff. I did have the thyroid antibody test that was positive so my Endo Dr. told me I have Hashimoto's. My thyroid was first overactive and I had a goiter on the right side (same side as my bad ear) Now my thyroid went the complete opposite way and I have hypothyroidism.
My TSH level was at 59.00. I have never heard of a TSH level that high but the Dr. didn't seem too concerned. My TSH is slowly coming down and the goiter is now gone but I still think whatever happened to my ear all started from this crazy thyroid.
What are your symptoms? I have not found anything that helps, have you? I hope you feel better soon!
I'm having a rough morning. I don't think my symptoms are any worse; just feel emotionally worse. I never got the prescription for the valium filled, but thinking about it today. I don't really want to start any unnecessary meds; who knows what it would do. I don't want to slow any recovery, but my mental attitude is so bad.
I don't really remember what my thyroid readings were when my thyroid problems started, but my experience was similar to yours; overactive thyroid then underactive. The only difference is mine was from the change in hormones during my pregnancy and after birth (post-partum thyroiditis). In my case, I don't believe this ear stuff is related. I was fine with my thyroid for almost 5 years. I know it had to be this ear infection and virus I had. It would be too coincidental if it wasn't. I just have to get these doctors to understand that. Meniere's, bolongy!
I think I made my head hurt today from too much crying. I was searching old posts this morning, looking for people who have recovered and it always seems like when I find someone, they are back on the boards months later with problems again. The only ones so far who seem to have recovered are ALSme and Subs. There were so many different names that came up from 2 years ago. I don't recognise them now, but don't really know if they have recovered or have given up and just don't post anymore.
Sorry.....I just feel so discouraged today. I am going to try and go to the Pirates game tonight. I hope I can make it through it. My husband asked my neighbor and his girlfriend to go. I don't really feel like socializing. I actually hate talking to people anymore. I just feel so awful, I'd rather not speak. No one understands how I feel anyway. Hard to believe I use to be a Human Resources Manager, huh?
Take care....I hope the pressure and dizzies aren't too bad for you today.
Last edited by gloria2936; 08-05-2005 at 08:36 AM.
I'm glad you are going out tonight and hope you have a great time. I have a hard time talking to people too. I work doing accounting for a family business which is good because I have to leave quite often for Dr. appts. and most places would not be so understanding. I used to be a hairdresser and thank goodness this didn't happen to me then. I would never be able to do hair with this crazy stuff.
I feel really down today too but don't know why. The pressure and dizziness isn't to bad today. I think it's just the wonder and worry that this will never leave, but it has to! I take Ativan for anxiety because I don't think I would be able to make it through this without it.
I hope you have a great time tonight, just relax and have fun you deserve it. I'll be thinking of you.
Wow....I don't even know how you could even mess with numbers feeling this way. I have an accounting background from my degree and the company I worked for my direct boss was the CFO so I did somethings for him sometimes. I would never be able to think like this. I had to have my husband take off a lot too for dr. appts. He has a computer business and it is a good thing so that he is more flexible.
Speaking of hairdressers; I finally got a haircut. I made myself go over the weekend. I had been dreading it since February. I did not want to sit still in that chair and I was so afraid that the hairstylist would talk to me to much. Isn't that terrible not to want to talk to anyone? Good thing I have long straight hair; I can go long without a cut. (lol)
Speaking of anixety. I wonder if it is getting the better of me. My symptoms aren't nearly as bad as when it all started; even though I still feel awful every day. I think you are right. I think it is the wonder and worry if this will ever go away. I don't remember what it was like to be me. Oh I would do anything to have that back. It is funny how the little things in life that got me so upset before doesn't make me so mad anymore. I miss doing little things I use to love, like scrapbooking and reading. All I read now is medical stuff; ear stuff. I miss having the energy and feel good to do things with my son.
Did you have any side effects fromt he Ativan? I'm so afraid to take something for fear of reaction to the drug, side effects, slowing recovery. Howie wrote some good posts to my question about this before and I decided not to take it, but today I feel like maybe I should. Maybe it will give me a little vacation from this crap.
I hope you have a good night and that is great that you don't feel too bad today too. Just maybe....little by little it will go away. (I am still concerned the tinnitus is here to stay.) I almost feel as if the tinnitus goes away it all will go. I feel the noise is the result of something wrong and if it goes, I know I will have healed and it all will go.
Thanks for talking. I feel a little better now.
Last edited by gloria2936; 08-05-2005 at 09:31 AM.